What's On YoungMinds?

00:00:00
[Intro music]
Audrey: Hello and welcome to What’s On YoungMinds? A mental health podcast for and by young people. I’m your host, Audrey, and I’m the Senior Corporate Fundraising Officer at YoungMinds, the UK’s leading charity fighting for young people’s mental health.
On this episode, one of our brilliant Activists shares their experience of disability and mental health. We’re also joined by one of our amazing Youth Advisors to give backing and facts as to what mental health and disability looks like in the UK at the moment.
We’ll be exploring how mental health struggles can show up at different stages during education and how this can coincide with physical disabilities and neurodiversity. So, let’s get started and find out What’s On YoungMinds?
00:00:57
[Intro music fades out]
Audrey: Today I'm joined by Jess who is a youth Activist. Our Activists are an amazing group of 14-25 year olds who campaign for change by speaking up about their own experiences of mental health, and she joined YoungMinds because she had lived experience of mental health and has some really, really interesting insight as to what it’s like to be a young person, especially a young person with disabilities, so I’m really, really happy for her to be joining the show today, thank you Jess!
Jess: Thank you!
Audrey: And I’m also joined by Anna who is one of our Youth Advisors. She also joined YoungMinds, similar to Jess, she noticed how mental health was affecting the people around her but also herself, and wanted to be part of the change and help young people’s mental health in the UK, so thank you Anna!
Anna: Thank you!
00:01:48 – Jess’ experience at school
Audrey: It’s great to have you here, so let’s get started. Jess, can you tell us a bit about your personal mental health journey?
Jess: Yeah, so around primary school, I suffered a lot with panic attacks and anxiety. Always been quite a shy, quite introverted person, and I was the only sort of person in my school with physical needs. And it was quite difficult, because I would kind of compensate a lot because I was quite like a bright person but, because of these learning differences or developmental differences, I just kind of became a bit of a hermit crab. I was just constantly anxious all the time. One thing was because of the environment. I've always been a very sensitive person to noise. I suffer with the condition called hyperacusis, which is extreme noise sensitivity, and it's linked through brain injuries, so it's not the same as… I mean it is linked to the autism spectrum and ADHD, and I've got both of those, but [hyperacusis] predominantly comes from the brain. And I just found that making friends and keeping on top of everything was just really intense. And I just became extremely anxious, and it just produced a cycle that kind of, in the end, did actually kind of burn me out. And before I got referred to CAMHS and I thought, you know, I'm going to start getting the help I deserve, I found out that I had a cancellation for an operation I was having. I was aware that I would be having this operation, but I wasn't aware of how long or the impact of how long this recovery would be. So, my physical health basically came first. I had to look after that because I had to basically relearn to walk again at the age of 12/13, which took a year. Prior to that obviously, in that moment, I was so, you know, caught up in the physio and the recovery that I didn't really process what was going on, which led me to developing delayed-onset PTSD, and I had been suffering from depression to this point, but not linked to… not linked to the surgery, but of course having then PTSD on top linked to that was kind of terrifying. My perception of growing up and dealing with things massively changed. I never viewed, you know, emotions or people and situations in the same way again. I would end up repeating my work over and over again, because in the classroom environment, it was really hard with the noise or keeping up with a slower processing feed. Any neurodivergent person will know exactly what I'm talking about.
I actually left college after my first year because I burnt out. And I didn't really know what to do. You know, I was kind of contacting a lot of helplines and people trying to figure out what to do. And then I saw that YoungMinds were doing their Activism program and I thought, you know what, like this is the perfect time to do it because I've got loads of free time. And I need to, like, get out there and I need to share my story. That’s how I got involved was just through sharing my story and just being honest about difficulties that I was having. And I thought it was definitely worth it, especially connecting with young people, because I think that's what I was lacking at that point. You know, I’d told lots of people about my story like close friends or family, but what I was struggling with was that I had no other external connections. Joining the program has definitely helped that and in terms of my confidence as well, because prior to that, if I hadn't had a platform to share that, I still think I would’ve been really struggling right now, so yeah, definitely been really beneficial.
00:06:22 – getting ADHD diagnosis
Audrey: Thank you for sharing that, Jess. That’s really lovely to hear and gives a really rich context as to why you joined the programme. I also have a learning difficulty. I've got dyslexia, which affects me in funny and wonderful ways, but it has been quite significant especially in my learning and educational years and as I'm doing my Masters as well now I'm finding other ways that it interacts with my learning [laughs]. I really resonate with, especially what you're saying around neurodiversity and the commonality that people with neurodivergent people experience at school. That feeling of feeling so misunderstood, feeling not being seen and not really having an understanding of, ‘is it me?’ Or, you know, the things that I certainly experience were, ‘am I just stupid?’ You know, where they question themselves rather than what they're experiencing at school, because there's such a lack of understanding. Anna I’m going to bring you in here and ask if you have any experience of that.
Anna: I mean, the schools just aren't equipped to deal with the mental issues or other sort of issues like neurodivergence, because the impact is so broad but often not valued, because it can lead to so many different things. But the schools have a one-set approach. So often neurodivergence isn't accounted for, which can lead to, particularly autistic people, masking and camouflaging. Which can then further lead to bad mental health issues like exhaustion and also can have an impact on physical health. And delayed diagnosis of like ADHD or autism, because you're constantly feeling like you have to mask and camouflage your behaviour.
Audrey: Mmm, that resonates with me.
Jess: Yeah, I kept having this mentality of, ‘oh, I've been through the pandemic like I'm sure I can work it out.’ You know, I'm sure I can work out all these organisational demands, I'm sure I can manage my emotions, I'm sure, you know, I can stay focused in lesson if I just use the Pomodoro Technique and I know how I learn, you know. I had this mentality but I was just going along with the stress of everyone else and thought, it’s because everyone else is stressed, that must be why I'm stressed! Everyone's finding the workload massive at A levels, you know. And then I realised that there was such a reliance on organisational skills. The whole executive function of being able to switch between tasks, being able to manage your emotions, being able to respond, like the correct answers in a social situation, that I was like, I think I've got ADHD. I was just compensating the whole time. I was trying everything I could do from the support I got and everything, but I was still convinced that there was something else going on. As Anna said, it led to me just masking. I'm very much a perfectionist anyway, but I felt the amount of effort that I was having to put in was too much of an emotional cost. I eventually did get an ADHD diagnosis after being on a report… on a waiting list, sorry, for a year. But I just kept being put on a rota of junior doctors to try different medications. And it wasn't until that I had a hospital admission, they realised that, okay, we need to sort this out. And I'm also now in the process of getting an autism diagnosis as well. So, yeah, it's just been a bit of a whirlwind, to be honest.
Audrey: It does sound like a whirlwind.
Jess: Yeah!
Audrey: And I just want to thank you, Jessica, for being so generous in the amount of detail that you've gone into about your life and the intersectionality of these difficulties that you've experienced and I actually really, really admire how articulate you are in explaining what this has been like for you. Anna, I’m going to bring you in here.
Anna: In terms of the ADHD diagnosis, I think, in particular for women and girls, it's a difficult one because the criteria is mainly based on observations of males, which is not always the same as the way that ADHD presents in women. Which just adds even more complexity to all of the, sort of, stress you’re already under, if you’re then not getting the diagnosis that you need.
00:11:20
Audrey: Mmm, yeah and it does make it a bit tricky, doesn't it, in terms of what that means for you know, other young people, but especially young girls out there that are needing help and are potentially struggling in school especially. Jess, what areas of your life have been impacted by your mental health?
Jess: It is all about relationships and understanding people. Confidence as well, massively, my self-esteem. You know, I'd like to think in some situations that, you know, I have an advantage like with empathy and different things. But generally, I still suffer from quite a low self-esteem and it's just my general emotional regulation and like, I'm going to be fluctuating daily or I'm not always going to be aware of what's going on because of the way that I perceive things. And yeah, it's difficult to problem solve when you're not taught how to problem solve with your brain. And that's something that I'm navigating now is learning how to problem solve which sounds really, I guess, silly to other people because I'm seeing other people doing things and people are like, ‘well, don't compare yourself to other people.’ I'm not intentionally, but when people around you and the structures around you don't facilitate how you learn, that's really difficult. And my education's been impacted. They're like, ‘oh, but you're really clever you know, don't be so hard on yourself.’ That’s something that I loathe as a phrase.
Audrey: Yeah, I mean, if you hear that ‘but you're so clever’ there’s a message in that, there’s a loaded message of ‘you should be happy because you're smart’ rather than the emotional difficulties that you've experienced from education and that's a very narrow way of understanding mental health.
Jess: Mmm.
Audrey: and isn't a very, you know, it's not a very healthy way of understanding mental health, and what kind of message is that to young people as well?
Jess: Mmm, exactly. Like, on a developing or adolescent brain, what is that shaping?
00:13:39
Audrey: Yeah, exactly. I suffered quite badly with my mental health when I was growing up and I had a lot of support, and still do. I still go to therapy every week. And I'm also training to become a therapist as well. And I know that you’re still quite new and fresh into your therapy journey and I wondered, feel free to only give as much information as you feel comfortable, but I suppose it's interesting to know how that experience has been for you as a neurodivergent young person. And if you’d recommend therapy for other people out there?
Jess: Yeah, so I would say that unfortunately the route with CAMHS and often is gold-standard CBT. And unless it gets picked up on, like in your early childhood, they are going to say CBT and I think it is a journey personally of keep advocating. And keep being honest with your practitioner or whoever that there are other things going on. And it is quite frustrating, but be honest about… I think my advice would be to be honest about where you're struggling. Don't hold back because eventually you will get there, but don't knock like trying like other like apps or therapists or even online services to explain your situation, because of course that's not the same as therapy, but I found that being able to connect that way was giving me a bit more hope in those situations where I was like, ‘but there's nothing I can do.’ And I think if anybody's been through CAMHS or are in CAMHS, just know that it isn't you that's wrong. It's not necessarily the practitioner that's wrong, but it might be the way that it's structured. And it is going to leave you with a lot of questions going, ‘but I don't understand, but I don't understand’ and it is frustrating. But try and hold on to something out of that that you're getting out of it, because that's what actually held me through that. There is a point to it, even if you can't see it.
Audrey: Thank you, Jess. I definitely relate to that as a young person who went through the CAMHS system as well. Often when you first enter therapy, I think because they are quite abstract sometimes theories and ways of understanding the mind that, especially as a neurodivergent person, you're sort of left wondering, what is this all about?
Jess: Yeah.
00:16:16
Audrey: But yes, I think if you do stick with it and you build that relationship with the therapist, you can often start to sort of see why this, why this does work. A lot of the time, but not all the time. I will just say as well if there are any young people out there that are wondering about where to get help, please do check out the YoungMinds website. We've got some really great resources there. There's also The Mix which is a young person's online, one-off counselling support service that's really, really fantastic and then I would assume, Jessica, did you talk to your parent or an adult when you first started thinking about entering therapy and would you recommend doing that as well?
Jess: Yeah, I mean with my journey, because I was quite late diagnosed, it sort of came to a conclusion that I was going to be seeing a private counsellor. But definitely just, I think for me, it was hard, but being more open and honest about the struggles. I think sometimes you kind of want to recoil a little bit because you know, they might be your parents or whatever and you don't want to say anything that might, you know, upset them or say anything too personable to them. But I think actually through being more open and honest about it, that's how I kind of got into the therapy because my parents could see that I was beside myself through the CAMHS system. And I think because of the added disability as well, I think I was concerned that I wasn't going to be able to understand it myself. And I didn't want to have to keep having a reliance on other people. So, if you can look, look on the Counselling Directory through the British Association of Counselling, because they can be in your local area and through your journey, you'll be able to select what is really impacting you. It's just really important that the intersectionality is there and that you feel comfortable too, 100%.
Anna: It's also something YoungMinds is working towards of like having a trusted adult, which I think is an important thing. Because then you can get help and if the help isn't going through CAMHS, because that doesn't work for you or the waiting time is too long, then there's always other routes, like a trusted adult or like going on the YoungMinds website. Or private therapy if that’s affordable for you. But if not, then there’s other options too.
Audrey: Yes, it's very important that young people have trusted adults in their life. And if you're a parent listening to this and you’re wondering, ‘how can I help my young person?’ or you're perhaps feeling a little bit lost or you just want to get some answers, obviously please do check out our website, but you can also call the Parents Helpline that YoungMinds have and it's a free, confidential service, so please do check that out.
00:19:16
Audrey: Jessica, I wondered if you might give us a little bit more information and background as to how people can be better equipped to understand neurodiversity and mental health. And one of the questions that I want to pose to you is, what do you wish other people understood about your everyday life experiences as a disabled person?
Jessica: Erm, focusing on neurodivergence, I think sort of the thing of ‘have you tried this?’ or, you know, ‘that's life we all go through difficult situations.’ First of all, that's situation dependent. And I think I would have said it sort of brushes off some of the issues that disabled people can have. Particularly not just externally or like overall but like in relation to a task. A better sort of comment would be, ‘is there anything I can do to support you?’ or ‘do you need help finding out what you need to do?’ Because sometimes it is that problem solving, a delay or just, you know, we are self-aware, but sometimes we're not always aware of how much energy we're going to use, what we need to do, what support we actually need. Because it takes us time to figure that out. And if we've already got lots of other information going on, that can be really difficult. So, I just think compassion and patience is a very important trait to have and being as direct and as concise as possible and not overloading us with kind of unsolicited advice. It’s important to praise us and comment on how well we’ve done, particularly on things that we struggle with. And I'd like to reiterate that a lot of that is things that neurotypical people don't struggle with, like those step-by-step instructions or getting out the door on time or breaking a task down, because we see the bigger picture probably or we see the details before we see everything else. And if you’re anything like me who's got a brain that contradicts itself, likes the detail, but sees the bigger picture at the same time, that can be really difficult. So, I just think those kind of comments and that kind of non-condescending. Impact is just really important.
Audrey: Mmm, yeah, I would totally agree with that. And I would build on something that's really helped me is particularly when people I'm working with have taken an interest in how it affects me, just being curious and being open and asking questions like, ‘how can I help you in the work that you do?’ or ‘what do you really enjoy working on?’ for example, ‘What do you enjoy doing? What does your neurodiversity, like, aid you to do in that sort of sense and where can I kind of support you with?’ And I found that to be like such a freeing thing as well, because it makes me feel like oh, I am good at something and I can be really, really good at other things, there are just other things that I struggle with or just my brain is just like, ‘no [laughs], no can do!’ and it makes, yeah, it definitely helps boost my self-esteem as well, especially coming from the kind of early part of my life where education made me feel like the way that I was didn't fit. And now I feel the more kind of like people around me who I work with ask questions that are open to it and celebrate me for my strengths. I feel less like I don't fit more like I do fit just in a unique way and that's a really, really important thing and I wish the education system was more equipped to make or help neurodiverse people to feel that.
Jess: Yeah. I think I would also like to add as well that, because of the physical side of things, I think sometimes people would say like, ‘oh, it's kind of expected that you're neurodivergent’ which like on a, on a biological level, yes, and on an obvious level, but I just find those sorts of comments not very helpful and I think, anybody that’s listening here that’s got a physical need and suspects their neurodivergent or haven't been diagnosed, just know that it's not you [laughs]! That it's people's ignorance and actually you’ve got a lot of strengths that other people don't have. And they will be uncovered it's just it takes time for those to be uncovered. And there will be people out there that will make reasonable adjustments that are reasonable and will allow you to make those adjustments in accordance and it's not seen as, you know, an extra, you know, difficulty or ‘I thought this, I thought that.’ They will be able to understand where you're coming from and work with you.
Audrey: Yeah, and I think one thing I'll add to that is you’ll start to notice the people that are patient and people that don't assume. And that's something that you really want to be drawn to, I suppose, you know, and encourage that way of being. You know. neurodiverse people with disabilities, we do really need people that are patient and open to understanding rather than assuming. Anna, did you want to come in at all?
Anna: You’ve got to listen, I think, and I think that's why it's so important that, Jessica, you're here talking and giving us your experience. Because it's, I think, an issue deeper within the system that the people with the disabilities aren’t listened to and then accommodations for them aren't actually what's needed. So, I think it's really important just to do what you’re doing, Jess!
Jess: Oh, thank you.
Audrey: I concur.
Jess: It’s good to celebrate, you know, that’s the whole point of this podcast and to be positive, but I think also it's being realistic that life is quite tough sometimes. And it's just important for people just to be mindful of that and be compassionate and offer support, as I've said. But also, don't treat us like we're little children. I think, you know, we do have a strong sense of self somewhere. It's just, it doesn't always show itself unfortunately, because of the way society is sometimes. But yeah, it's just important just to be mindful of how difficult things can be sometimes. But, you know, it's better that it is a shared experience, you know, you aren’t alone and that's something that I always try and hold on to when I'm in this difficult situation is that I know that I'm not alone. Other people will be going through the same thing.
00:26:04
Audrey: Question to build on that, Jessica. Is, have you… this is more of a kind of exploratory question, I suppose. I'm thinking about when you do start to feel a bit maybe burnt out like you were talking about or a bit stressed out, are you always aware of when that's starting to build up? Are you able to share that with your kind of trusted circle that if these symptoms start showing I might need help?
Jess: Yeah, I mean, sometimes I’m not always aware because sometimes there's so much going on that it just comes out as an overload, but often you'll find that within your kind of body that you start feeling quite anxious or you start, you know, residing more into traits that other people would see, okay, this is like a meltdown or this is like where she zoned out or whatever. But I think I'm quite good and I think in situations, like if I'm quite anxious, like I'll always bring my headphones with me and always say to people before a conversation or before something I've got to do that, you know, I struggle with lots of eye contact. I will need things broken down, I'm not being rude it's just the way my mind works and how I work. Just so people are like, aware, because I think that's just important. And yeah, I think I've definitely become more confident and at the end of the day people are there to support you. I know sometimes there are situations where it just happens and it can feel awkward, but the more honest and the more upfront you are with people about it, and there is nothing wrong with being direct, trust me. Yeah, it's definitely really helpful, but I've definitely become a lot more aware of that through my journey.
Audrey: That's really, really wonderful to hear and I'm so, so glad to hear that you've… maybe I'm interpretating a little bit about what you said, but what I hear is you've kind of built coping strategies? Does that feel right?
Jess: Yeah.
00:28:10
Audrey: And I wondered, if you feel comfortable sharing, what your favourite coping strategy is? if you have something that's fun or doesn't necessarily have to be fun.
Jess: Yeah, one of my favourite ones, particularly if I'm struggling with the whole kind of impulsivity thing of, I've been sat down too long like I need to blurt something out or I need to do something or I’m struggling to wait or it's too noisy is, I have my earplugs in before so I get used to that, but then I'll also try and gamify something in my head. So, I often then don't feel that it's such a chore having to sit down and like listen to the instructions. Often just counting something to distracting is really useful. Breathing techniques. I know it sounds really cliche when I say breathing techniques, but they do work! I quite like the subtlety of them, particularly square breathing. That's really useful. Yeah, and again, just like fidget toys and fidget rings or anything that can distract you away from that anxiety, I find is particularly useful. But I think people's self-awareness will kind of guide them to what works for them, which is the beauty of being neurodivergent. You kind of do know what works for you and what doesn't.
Audrey: Listening to you speak I was thinking, oh yeah, I used the headphones one as well. But the one I've been using recently is glimmers. I don't know if either of you know much about glimmers, but they're basically the opposite of triggers. So, on my phone I have, on my notes I've got a list of things that help me feel safe and centred and, especially if I'm feeling a bit overwhelmed or sensory overload and that sort of thing, or if I'm just feeling a little bit unsafe, I'll remind myself of one of my glimmers. So, for example, like the smell of wood burning at dusk or something a bit pretentious like that [laughs]. Even just listening to like my favourite music helps me feel a bit more centred, a bit more safe. And that feeling of groundedness I think is quite important for people with disabilities or neurodiversity because often, you know, the world can feel like it is made for neurotypical people and able bodies and that sort of thing. And I often reflect that it can feel like our bodies shouldn't be here or our brains shouldn't be here. Bit of an exaggeration perhaps, but it's really that feeling of safety I think is really important for people to feel, and they're absolutely worthy of feeling that. That's just something that I've been reflecting on recently. Anna, I don't know if you had a coping strategy that you really love?
Anna: In a lot of my lectures, I knit, erm, which I feel like maybe in school they wouldn't be a fan if you just start knitting in lectures. But maybe in college or I mean at university it's completely fine. And when Jess mentioned fidget toys and I was like, it's kind of like a fidget toy I guess in a sense. It’s just doing something with your hands so there’s a bit of focus somewhere else, not just staring forward and trying to listen and none of it going in.
Audrey: Yeah. Another thing that I suppose, maybe generally speaking, but I do believe that neurodiverse people are sometimes even better at understanding patterns or, you know, the bigger picture so things like knitting, maybe an extra talent!
Jess: Yeah!
00:31:40
Audrey: And Jessica I was going to ask you what would you tell a young person struggling right now? What do you wish your younger self knew?
Jess: That recovery is a journey and not a destination. My typical ADHD brain likes to solve everything in one go. And I think, reflecting on that and seeing it as a journey that there were bumps in the road instead of it being something that's wrong or this is really difficult, has really helped me. And that, again, life is tough, but you know, so am I! I hate saying that phrase, but it is something that I need to remind myself of.
Audrey: I love that phrase too and I think that's probably one of my most used phrases when I'm talking to my friends about their mental health as well. And I think it very much speaks to the journey that many neurodivergent and young people with disabilities have gone through. In that sense of feeling like, one day I'm going to feel valid or one day I'm going to feel like I do have a place here and the kind of confidence that I know is inside me will come out and that is.. that journey builds a very special type of resilience, I think. So, I, yeah, I really understand that as well.
Jess: Yeah, I know how like exhausting it is with mental illness, or having to like advocate for yourself. Like, indirectly or directly before the people. I know sometimes you just want an answer to everything, but you just sometimes have to keep going. But also, please remember to be kind to yourself. Again, talk more, be more open and honest because people… you know, you're important and you deserve to be here in this world, like you're here for a reason. There is light at the end of the tunnel. And one quote that I’d like to share is, ‘you grow what you go through’. I know sometimes in a difficult situation it can be that you grow that difficulty, but actually you're growing as a person. What is that emotion to teaching you? You're aware of that and you know that you deserve better, so what is it teaching you on a positive level, you know? That's always important to remember and that's why I love that quote, because it's all about becoming yourself. At the end of the day, you're doing it for you, no one else.
00:34:13
Audrey: Yes, thank you so much Jessica for sharing that. And I absolutely loved that quote that you've chosen to share there, so thank you. I don’t know if anyone else feels this, but when I put on music, I often can feel it in my body and it’s a really wonderful feeling. And when I hear music, I just want to dance, so often a way for me to feel connected to my body and feel grounded and to kind of get some energy out sometimes as well, or to give me energy, I will put on some music and just dance. Dance for about half an hour, just see where it takes me, I have to be completely alone [laughs] can’t have people watching me [laughs], but it really helps me feel connected to myself, free, you know, from my eyelashes to the tips of fingers, to the tips of my toes, I feel really alive when I listen to music and I’m dancing. So, I was going to ask you both, if you had one song that you would say has helped you with your mental health so we can add it to our Spotify playlist and so our listeners can check it out. Jessica, do you have one?
Jess: Yeah, so I've chosen This is Me Trying by Taylor Swift. One, because I love Taylor Swift and when I listen to it, it's about sort of saying like, I've had a hard time adjusting but, you know, I'm trying anyway. So, you know, it's being realistic and saying, I have a few things that, you know, I regret but do you know what, like you know I'm trying and that's all I can do.
Audrey: Thank you! Anna, did you have one that you wanted to share as well?
Anna: Off the top of my head, the song I've been listening to quite a lot recently is called Home Again by Michael Kiwanuka. I think it's just a nice song about, I mean, it's without going home again, but I think to me being away from home, sometimes it makes you feel a bit lost. And then home can be whatever you perceive it to be. So, it's grounding I guess in a sense.
Audrey: Thank you.
00:36:22
Audrey: We’ve come to the end of our podcast! So, thank you both so, so, so much for being part of the first episode of the YoungMinds podcast and as this brings us to the end of the episode, to build us out, I have a poem here that I’ve been reading recently that I just love and it reminds me to slow down as well and it's by Tagore.
[Outro music fades in]
Lo, the evening has come down upon the shore and in the fading light the seabirds come flying to their nests.
Who knows when the chains will be off, and the boat, like the last glimmer of sunset, vanish into the night?
00:37:12
Thank you so much to our Activist, Jessica, and to our Youth Advisor, Anna, for sharing their stories today. If you'd like to read the transcript of this episode, you can find it on the YoungMinds website and you can see the link in the description. And if you're inspired by what you've heard and want to be part of our movement, please do check out the YoungMinds website, and if you're feeling even generous perhaps, you could make a donation and check out the work that we’re doing. Thank you again and take good care.
[Outro music fades out]

00:00:00
Trigger warning: Just to let you know, the show today will mention crises, hospitalisation, and suicide, so please be mindful and kind to yourself when listening.
00:00:09
[Intro music]
Audrey: Hello and welcome to ‘What's On Young Minds?’, a mental health podcast for and by young people. I'm your host, Audrey, and I'm the senior corporate fundraising officer at YoungMinds. The UK’s leading charity fighting for young people's mental health.
Anna: I’m co-host, Anna, and I am a Youth Advisor, making sure everything is done in partnership with young people.
Audrey: On this episode we're joined by Rosie, one of our brilliant Activists here at YoungMinds. Rosie is going to be sharing her experiences and what changes need to be addressed for young disabled people accessing mental health services. So, let’s get started and find out what’s on young minds.
[Intro music fades out]
00:01:011
Audrey: So, Rosie. Could you tell us a bit about your experience with accessing mental health services, please?
Rosie: Yeah, of course. Thank you for having me. Yes, so I do have, physical and invisible disabilities. So, I am deaf and I'm also neurodivergent. ‘Neuro-spicy’ is what I sometimes say.
Audrey: Love neuro-spicy.
Rosie: Yeah, I have autism and ADHD and that just kind of gives you a bit of a background into like some of the barriers that I may come into contact with when accessing services. So, I've been on the mental health services for quite a long time since I was 9 years old. From being bullied and then going on to develop PTSD from that. I'm now 20 years old, so a good old 11 years under the NHS mental health services. I think right from the get-go, there has always been like a very big lack of understanding of deafness and neurodivergence. Deafness was never really considered like a potential influence on my mental health. I think that's – a big part of that is due to being able to lip read and speak clearly, so it wasn't a visible issue for them because they didn't deem that they had to put anything in place to aid communication.
So at the age of 9, when I was referred to CAMHS for the first time, it was raised, you know, that I had autistic tendencies and I was displaying this. And this was maybe part of the big picture as to why I was presenting the way I was. And because deafness wasn't understood, you know, everyone that I saw who was part of my CAMHS team just said, “oh, it's because of deafness” you know “she doesn't like change because she's deaf, she doesn't do this because she's deaf.” And I think that gives a very clear example how both disabilities – being autistic and being deaf – are really misunderstood within the mental health system.
Audrey: Mmm.
Rosie: Because you can be autistic and deaf, it's not mutually exclusive and for a long time that was, you know, the answer that my mum got when she, you know, brought up the different ways I was struggling and it was very much brushed off. Even though they weren’t experts in deafness, that was their response. Which is quite concerning, I think, that they’re kind of talking to something that they're not fully aware of.
A lot of mental health workers like compliment me or being so easy to work with, they make quite a lot of comments like, “I don't have to change my approach for you” or “I don't even remember you have special needs when we work together.” I think they think they're giving me a compliment. And they're trying to reassure me that I'm not a burden because that's thoughts that I struggle with quite often but actually they’re re-establishing that. That is really harmful when you’re dismissing how hard someone is having to constantly work. When you're dismissing their struggles of, like, listening fatigue, they’re masking, they’re overwhelmed in sessions, they're constantly having to get used to a new room because you never have the same room and by kind of saying, you know, “you're so easy to work with, none of that matters”. it kind of dismisses the feelings that do come up when your needs are unmet and you're having to put in that extra work.
So these comments kind of reaffirm that I need to change myself to be worth helping and I need to make sure that I'm palatable enough and I'm not too needy or there's not too many adjustments that need to be made for me to be worth helping and deserving of the space.
00:05:42
Audrey: Mmm. Thank you for explaining that, Rosie, that makes a lot of sense. I think we can maybe pause there for a moment and just reflect, and obviously you’ve not given your full story yet, but I think what I'm taken by is the sense that young people consistently feel that adults around them, and especially services, presume how they experience the world or how they experience their needs and it does seem like there's so much presumptions about what you needed rather than just being asked. That's the first thing that I'm really taken by so far. Anna, is there anything that you've noticed or reflect on?
Anna: I mean, I think. I think it was the same in the first episode where we spoke about neurodivergence and identifying as a female because the way that that presents is different, which makes the diagnosis harder. And then I also myself did some research into autism and deafness and found that quite often, people who are deaf are not diagnosed because they have quite a different linguistic culture. I’m sure you know plenty more than I do if you wanna expand on that?
Rosie: Yeah, so they kind, deaf… with being deaf, especially if you're a native BSL user, things can be very direct in how you talk so, you wouldn't necessarily say things in the way that we do in spoken English. There's no beating around the bush when you're talking with deaf people – it's very ‘this is what I need, this is what I want’ – that's kind of it. And I suppose there's similarities in that with being autistic as well. So they call it being ‘deaf direct’ where it comes off as very, like, blunt. Not really being aware of social norms or social expectations but it’s purely because you're deaf. And I think that's where a lot of it gets kind of confused almost as ‘is this deafness? Is this person autistic?’ And kind of trying to find where the lines are.
Anna: Yes, it sort of highlights the importance of intersectionality in care. So having people who are willing to look after you who have the experiences with the deaf community or are deaf themselves. Or neurodivergence. And then another thing that I picked up on Rosie was you talking about your listening fatigue. And then that, I think, in combination with masking, with autism, must make it even harder for you, especially when people are saying that they don't have to change anything when you're changing all of these things already.
Rosie: Yeah, listening fatigue and masking vary so differently from person to person. And yeah, it's very much not understood, and I think it's very easy to… when you're not struggling with it, and you know you're just going about your day-to-day job as therapists and different service providers are. They kind of sit there and think, you know, when it's pointed out that this person has this struggle and they're like, “well, I don't have to do anything”. Because this person isn’t showing me that they need me to - which is all part of masking – then they're not really taking the time to think, “Well, if I'm not doing these things, I know there is a difference there and there are things that this person struggles with things.” What are they having to do to make sure that things go as they should go? And are they going to be getting the same out of appointments as a hearing person, as an atypical person? Because I suppose so much energy is going into lip reading, into making sure I've understood things correctly, into masking, into dealing with overwhelm, that I'm not actually getting the opportunity to engage in therapy to the best of my ability because I'm so focused on everything else, how can I possibly be taking on board everything that they're trying to teach me?
And I think it ties into the spoon theory, doesn't it? Like, I don't know how aware everyone is of the spoon theory?
Audrey: I'm not aware, please do say.
00:10:44
Rosie: The idea is that everybody starts with, let's say, 15 spoons in a day. Your average person, whatever an average person might look like, may use a spoon to brush their teeth, to get up, brush their teeth, wash their face, and do their hair and get dressed. Whereas it may take someone with a disability, whatever that may be, that may take four spoons. And then maybe the person with a disability has an appointment that day. Maybe they've got to go to the audiologist because they're deaf. And that's a task that someone, the average person, wouldn't have to. But that appointment is going to take three spoons. And, it kind of… you kind of see that very quickly the disabled person will run out of spoons quicker and probably will end up working in a spoon deficit. And that's kind of when you go on to burnout and the feelings of, like, the symptoms of mental illnesses that that person may be experiencing are exasperated because they're constantly trying to scrape spoons like from next month, to make sure they can do this month.
Audrey: Thank you for explaining that, Rosie, that makes a lot of sense, and I’m really taken by how much energy things like today must take for you as well, but there's the willingness there for you to have this platform to explain this and I'm very grateful for you being able to do that. So I appreciate that.
Rosie: Thank you.
00:12:31
Audrey: Did you want to talk a little bit more about your experience?
Rosie: Yeah, so I was accessing deaf CAMHS, but unfortunately because they're a specialist team and they do have such a big catchment area, they can't stay involved for too long. And during COVID and post-COVID all support kind of just stopped completely. I was dropped. There was just nothing from CAMHS at all, no input. I started spiralling into crisis quite quickly. I kind of built up the courage quite a few times to be like, I'm struggling. I'm reaching out for help. Multiple times. And then I was offered phone call consultations.
They knew I was deaf [laughs]. That hasn't changed, since being discharged from deaf CAMHS. And obviously being autistic as well, phone calls can also be hard to understand tones. Not that I can do them anyway. But there's a lot that just is not accessible about phone calls, so I wasn't able to access the support that they were offering.
After COVID, staff had to wear PPE, so personal protective equipment, so things like masks, visors, two-metre distance. A big throwback I think for all of us even thinking that was a reality a few years ago. And, so I could lip read, my workers were asked by the CCG to wear visors. Every single session I went to – I don't think I remember a session where it didn't happen – I would have someone complain to me about the visors. They would say how the masks were better because it wasn't so annoying and they could breathe better with the masks and the visors were horrible to wear and they made them feel gross and they didn't like them.
I understand they're not nice to wear but it felt very unnecessary and unfair to keep saying that to the patient when you know that they're struggling with feeling like a burden and you're constantly reminding them, “I'm having to do this for you, and I don't like it.” And even though that wasn't exactly what was said, that was the message that was being projected very clearly.
I would say, as a whole, mental health services have kind of cemented a lot of core beliefs around how burdening I feel, in gen- like, more around my disabilities they’ve cemented that, but it kind of goes on to play a bigger role in… I can't change that I'm deaf and I can't change that I'm autistic or that I have ADHD. And as much as I'm proud of those identities at times, there's also times where they’re uncomfortable and where I wish I could change them because I feel like that's what is wanted from me, from like society around me but also those services that are meant to be trying to... I suppose, they're meant to be trying to make me want to live as I am, right? And that isn't currently the case and I really empathise that I'm not the only one having these experiences.
00:16:18
Audrey: Mmm. Yeah, I really, I hear you there and I can… I can relate a little bit to your experience in the sense that I have dyslexia and, although it's not really impacted my life, when it comes to processing emotions, sometimes it can impact things because I don't always… I can't find the word sometimes and that can be incredibly frustrating and I actually noticed, because I've been in therapy for a long time as well - therapy buddies – I noticed that throughout my whole time getting CAMHS and NHS and private therapy as well, I hadn't had a single therapist that even considered what that experience of being neurodivergent and struggling to find the words to match the emotions, what that might mean for treatment. So there is such a… for me, what comes up is there's such a huge variety in how each individual experiences how they process what's happening to them, and it is reliant on the mental health worker or the person in the community or the family member to listen and to find out rather than presume.
Rosie: Thank you for sharing that. I think, you know, I'm sorry the you've had that experience. Your needs should be considered and whether they think they're relevant, whether they think they’re big or not, you know, that's not for them to decide. That's you as a person to decide.
Audrey: Mmm.
Rosie: And I think and even things like that, you know, there's a high possibility, I don't know you as a person Audrey, but there's a high possibility that as you were growing up in school you were taken out to do extra reading to make sure you were reaching the goals that the teachers were trying to meet, that the headteachers were trying to get them to meet so that they would meet OFSTED goals and – it's a whole vicious circle. And that impacts very much on the relationships that you build with your peers and with your friends as well.
You know, I can talk about it from being deaf. I would, you know, the only reason why people can hear me on this podcast and they can understand what I'm saying is I went through extensive speech and language therapy, like, twice a week, for an hour at a time, for months. Maybe even years actually, being realistic, and how different I felt because I was being taken out of school and I understand why, but I didn't get the same opportunities to build friendships and feel normal in a way which we all are kind of seeking to feel in some shape or form.
Audrey: Yeah. Something that I'm reflecting on now is, I suppose what I hear is almost missing in that interaction with the mental health services is getting an understanding of what young people who are accessing it with disabilities, getting an understanding of, what has been their experience of communities? As in school, as in extended families and networks, what has the development of having a disability been like? Because, like you say, if you've had a traumatic time at school because of the experience of being taken out or bullying or just even going to school and having to you know mask all the time. If that's not really considered and then this young person is going into another system, another community, then there's something quite massively being neglected there I would argue.
Rosie: I would definitely agree. I think, you know, at those ages where we're going through those experiences, we are at the prime of our brains being so, you know, I don't know, the right word, but like mouldable.
Audrey: Mmm.
Rosie: And like, they're constantly picking up on different things within our environments and what's being cemented at those points? And how positive are they going to be? And what kind of lasting impact does that have on our chances of developing a mental health illness and also recovery from that? Because some of those things are deeply ingrained in us by the time - even by the time I started accessing mental health support at 9 years old - even if that would have been perfectly… perfect in terms of deafness being understood, neurodivergence being understood. And let's say I was diagnosed as autistic and ADHD at that point too. Those things were already quite deeply, almost like wet cement footprints, you know? It’s going to take a lot of work to be able to make sure those footprints are no longer seen or felt.
I need to convince myself I'm not asking for the world for those things to be recognised. And because I would tell a friend that they're not asking for too much, they are worthy of every bit of help. And they are worthy of probably more than what they are being given. It's just it’s hard getting yourself to believe it at times, I think, when you've got a bit of a messy brain.
Audrey: Yeah.
Rosie: And then you add a bit of spice and zazz, and then you've got a bit of a concoction [laughs].
00:22:18
Audrey: But it's a very good point to make and this came up in the first episode as well, I think. There's another element to neurodiversity where you do doubt your experience because we live in a neurotypical world. And when we're forced to live in a neurotypical world because that's what we're presented with, we constantly are questioning, “is it me?” And then there's the assumption, “oh, it must be,” because that's the other message that's reiterated in so many different ways to us so… it can be a constant battle. And I suppose what I hear there as well is with disabilities it can be layering of what individuals have, so for you, you have ‘neuro-spiciness’, but you also have your deafness as well. So, it makes it extra challenging.
So before I, I noted there that you started to talk about the change and or potential change and I'm I very excited to hear about what the future potentially looks like. But before we move on to that, is there anything about your experience that you wanted to share?
Rosie: Yeah. So, I have been in hospital multiple times following attempts on my life. I have been in crisis point each time I have been in hospital. I've never gone in as like a preventative measure. And each time I've been in hospital there's always been something that has just kind of made things worse in terms of how my disabilities have kind of been recognised or not recognised, and my access within hospitals.
So during COVID, I had quite a bad experience while I was in hospital following an attempt. And I was left unattended by a nurse, and I attempted again while in hospital, and I think it kind of shows that my risk wasn't really taken seriously. It was very much brushed off as, you know, “she's just emotional, there's nothing really going on there” and, you know, that decision to leave me unattended was almost fatal within hospital and I think that is quite significant to me. That someone thought that was okay. And following on to this, when my mum was then accompanying me 24/7 within hospital whilst I was receiving physical treatment, a nurse came into the room and she was wearing a mask which was very normal around COVID times. I was hysterical, I was really struggling, and just not able to communicate at all. And my mum had asked her to remove her mask and just keep the two-meters, three-meters distance if she wanted that extra bit of room. And the nurse refused. Instead, like, she got right up close to me, and she started shouting in my face and in my ears.
I don't think her concern was around safety because, even with wearing a mask, being in that much close proximity to someone where you're shouting in their ear directly, there's more chance of transferring germs and infection risk and everything else.
Audrey: But also feels – and I’m presuming it’s how you experienced it – it also feels a bit aggressive? To shout in someone's ear?
Rosie: Yeah, I think it kind of - it shows that volume doesn't equal clarity. You know, you can not be able to understand something and if you turn up the volume by 100, you’re just turning up the volume of what you aren't able to understand.
And I really need lip reading and lip patterns to be able to make sure communication is smooth and, you know, that's just on a general day. In those kind of situations, I probably needed a lot more than that and that was kind of the absolute basic.
There was no real time to step back and consider “what care does this person that has just attempted on their life... what can we do to make this as smooth as possible? Because it's already not going to be easy.”
You know, these experiences, along with many other experiences, have made me very reluctant to ever go to A&E unless I'm forced to. And I know, as a person, like, right now, sat here I know that isn't the safest approach to take but this trauma caused by hospitals and their lack of accommodations for being deaf, autistic and ADHD are very damaging.
00:27:26
Audrey: Yeah. Thank you, Rosie. Thank you so much for sharing your experiences so bravely, and… I’m almost speechless that you’ve had to go through these experiences and I’m desperately sad quite honestly that you’ve gone through these experiences. Thank you for being able to share those experiences with such courage, true courage. And thank you again for being so brave and courageous and being able to explain such adversities really.
00:28:00
I wondered if we could move into what changes you possibly foresee. Or, because of the experiences that you’ve gone through, and perhaps you have experiences of talking to other people who have gone through similar situations, what those conversations might’ve sounded like? Or anything that you wonder about what the future could look like for young Disabled people accessing mental health services? And Anna, definitely would love to hear what you think as well, but over to you Rosie.
Rosie: Yeah, I think that's quite a big question isn’t it, of what you want mental health services to be like to make sure they are accessible to everyone that's needing to access them. I think the key thing that I kind of understand is that every person who’s accessing these services – whether they have a disability or not or whether that disability isn't recognised yet, so they are deemed as non-disabled – we all have needs and preference. We are all very individual and there are thousands of ways to accommodate different people. I think it's unrealistic to expect mental health services and professionals to get it right every single time. But I do believe that there needs to be a more active effort to meet needs. And it shouldn’t be optional.
We are accessing those services because we are struggling with our mental health and if we are constantly having to fight for accommodations or adapt because there are no accommodations, this will have a lasting impact and prolong the suffering.
My biggest message – whether there are disabled people listening or non-disabled people who are just trying to figure out who they are and where they fall within the world – I think we all deserve to live a life that feels comfortable, safe and fulfilling, and you deserve the help you need to achieve that. We deserve to be treated with grace and respect like we would talk to everybody else.
There’s 8 billion people on this world and we all have a very different day and we all have very different experiences. Whether we're trying to abide by family expectations, whether we're trying to find our feet, you know, what our purpose is, what we like, what we dislike. To each 8 billion people, us included, it's all very different and it's all very unique. And we deserve – all 8 billion of us – even if our brain tells us that we shouldn't be included in that number, we are. We all deserve a space where we feel appreciated and where we don't feel like our existence is something that's problematic to others because we deserve love and grace, no matter what.
00:31:13
Audrey: Thank you, Rosie. What a stunning way to end the… end what you… how you foresee change or how you would like to see change. Anna, I'm going to pass the mic over to you to see if you have any reflections following what Rosie's been talking about.
Anna: Yeah, first I wanted to say, Rosie that was pretty incredible. Well done. Very well spoken. I think… I guess it's a theme throughout what you were saying the whole time and also at the end when you're saying we're these 8 billion people on this floating rock, but for some reason, the, sort of, mental health system and the education system, all of these systems, have this one-size-fits-all approach, which just doesn't work. It's a very neurotypical society and for you there’s the added thing of being a deaf person. It’s a sort of, very hearing society, so anything outside of that is often overlooked, which makes it even more difficult. So I think, if I could change it, it would be nice to have future where - I get not everyone will have everything exactly the way that they may want to - but at least an effort. Like, at the end of the day, it's not that hard to like, wear a visor instead of a mask. It's not difficult. And the fact that they make you feel like it's difficult is not fair.
Not to go too “hate the government”, but I think there’s a serious lack of funding in mental health which materialises in this one-size-fits-all because there's just no option for the other options. So there needs to be more funding. And then also it won't fall onto charities. Like, as great as YoungMinds is and all of these charities are wonderful – it shouldn't have to fall onto the responsibility of a charity. It should be covered by your mental health services.
Rosie: Exactly. I think, you know, you're talking more about like one-size-fits-all, and I think this is always something that I really struggled with because does anyone actually fit into the mould? Even if you are atypical, even if you are hearing, even if, you know, society is supposedly made for you. Do they actually fit into the mould either? Because who is this mould for? And I don't think anyone slots in as mental health services are hoping they would. So maybe they should start seeing the mould as the issue and not the people they're trying to like ram into it and then get all frustrated that it's not quite going to plan.
Audrey: Yeah, I'll just add onto that as well, I think often people who have disabilities already feel, or can feel, like you've been saying Rosie, a bit like they're a burden and sometimes going into the mental health systems it confirms that they feel like a burden. And then what doesn't help that, what exacerbates that, is feeling like their disabilities are a deficiency rather than something that just is who they are, and they need support with that. They don't need to have their… these elements of themselves reaffirmed or affirmed as deficiencies and it's up to the psychologists, the mental health workers, people in the community to really understand that there needs to be such sensitivity to working with people who have gone through adversities due to neurodiversity, which they absolutely will have.
We've always had some sort of message of “we're not quite good enough because we're not quite the same as everyone else”. You know, whether it's in school, whether it's in families. We've always had that message. So there has to be really really … there does have to be such sensitivity there of if you are entering into treatment with a young person with a disability that there's going to be some internal message here.
Rosie: Yeah, we already beat ourselves up enough. We don't need the professionals that are meant to be helping us to kind of add weight to the punches.
00:35:51
Audrey: And I suppose one of the things - because I'm going to add in what my hope is for the future because I'm being cheeky - but I share both your wishes in the sense I just hope one day there is more funding and more money put into these services that are already so at capacity and being constantly examined if they're even needed, which is just bananas to even consider that these services, mental health services, are constantly being reduced, restricted and re-examined if they're even needed.
They are absolutely needed and then it needs to be so much more availability of trained people and variety in people that, you know, people like us can work with. All sorts. Just much, much, much more funding. It's, it seems like such an obvious thing when we're talking about all of these things, yet it's being more and more and more restricted. So, that's my hope for the future.
Rosie: And I think that's the big thing that YoungMinds are working for, like Fund The Hubs, you know, prevent, don't just react. You know, we want to prevent people from having to go to A&E because they've had incidents or they're at crisis point. We want to be able to live a life where it’s recognised that we're struggling and that's taken as enough. And we don't have to get worse before we can even fathom receiving NHS help to get better and that's the whole big thing of Fund The Hubs.
Audrey: That's actually a very good prompt to get our listeners to go on to the YoungMinds website and check it out because we've got loads of different campaigns that you can get involved with, read about and support our work.
00:37:36
Audrey: So, to finish up, I wondered if you had a song because then we can add it to our Spotify playlist?
Rosie: Oh, so a big Taylor Swift fan here. [Laughs]
Audrey: How did I guess? [laughs]
Rosie: So, I think I would go for This is Me Trying by Taylor Swift, which is very much a song about, you're constantly doing your best and other people don't really view it as you are, but even the act of not trying is an act of trying sometimes. And trying our best looks different for everyone and that's kind of very beautifully explored by Taylor in the song. Which she told me over coffee one time because we're obviously best friends. [Laughs]
00:38:21
Audrey: [laughs] Well, that brings us to the end of this episode, What’s on YoungMinds? Thank you so, so, so much Rosie from the bottom of all of our hearts here at YoungMinds.
[Outro music fades in]
Audrey: Thank you for the work that you do as a young Activist but also everything that you've explained today. I can't imagine how exhausting it is to have to explain this experience and lip read and you know, talk about these adversities that you've been through, yet you have, and you've done it with such brilliance. And I know that there'll be so many people listening that will get so much from listening to your experience, so thank you again.
Rosie: Thank you both for giving me the space. And also, to anyone that may be listening as well, I think although when you're not actively part of a charity, either as like an Activist or Youth Advisor, it can very much feel like you're powerless. I think even by listening to the podcast, even by just making yourself aware of charities, there’s great power in that and never underestimate the amount of change that you can bring.
Audrey: Thank you, Rosie. And if you're inspired by what you heard, or you want to be part of the movement, please do check out our website and see how you can get involved.
Thank you again and take really good care.
[Outro music fades out]

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Hi everyone, Audrey from Young Minds here. On today's episode of What's On Young Minds,

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I have the honour of quite literally passing the mic as this episode

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centres Black disabled experiences. You'll hear from Femi, a filmmaker who loves nothing more

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than telling and amplifying unrepresented stories and two guests we've got Sumi,

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a professional writer, performer, public speaker and disability rights activist,

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and there's also Jaleel, a freelance illustrator with a love for comics, character design and

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storytelling. I really hope you enjoy the show and why not join in the conversation with us via

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social media and let us know what you thought of the show. As always, show notes can be found on

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our website as well as our amazing resources to get help with your mental health.

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Hiya, welcome to What's On Young Minds, a mental health podcast by and for young people.

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My name is Femi, I'm a Black disabled filmmaker and I'll be hosting today's conversation.

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Joining me today are Semi and Jaleel. Do you want to just give us a little intro?

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My name is Jaleel, my pronouns are she's a and I am a illustrator.

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My name is Semi, my pronouns are she, her and I am a writer, performer and disability rights

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activist. Great, amazing, thank you. So I thought I'd just kick this off with some kind of like

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finish the sentences. So I just wanted to start off with the first one, which is when I first

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started to come to terms with my disability, my biggest fear was... I think for me, it was the way

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that other people would view me because when I was starting to come to terms with my disability

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and accept it, I knew that I wasn't any of the ablest stereotypes people assume. I knew that I

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could speak for myself, that I had autonomy and all these things, but I knew that no matter what I

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did, no matter how sure of myself I was, no matter how much I walked down the street, like, yeah,

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like, yes, slay, I still knew that people would see something even less than humans sometimes

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when I walk by and nothing I could do would change that. And that terrified me because I was on my

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journey towards acceptance and I was like, but what can I do to stop that? And I had to realize

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that there's nothing I could do to stop it, that other people's ignorance is really their

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responsibility to handle and deal with. It's their responsibility to educate themselves and

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not think that way. And it's my responsibility to just live my life as confident as I am. And

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that's on them if they're ablest or ignorant.

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Period. What are you doing now?

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I think the main thing I always was worrying about was the sense of failure. Because for me,

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I became disabled right in the middle of uni. And I just turned 20. And for me, it was kind of like,

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I've only just kind of started to find myself already off like, you know, puberty and secondary

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and all that. And I'd finally find myself. And then it was kind of like, what do I do now? I was,

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I think for me, it was the sense of, it was that internalize ables of, oh, I've failed at life now

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because I can't do what I used to do. I'm not going to be able to succeed. I'm not going to be able

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to have all these milestones that everyone else around me is getting. That's not going to, that's

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not planned for me. This is not, I don't have control. And I was generally like that.

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I just felt like I was failing because I have had this pride that, oh yeah, I can succeed. And I was

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really good at that. And then now I don't feel like I'm good at that anymore. And it took a very long

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time to change that mindset. Like there's not really a set, there's no failure. You don't fail at life

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when you know, you, this something like this happens, you just do life differently.

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I feel like I've got like a mixture of both of what you said, because I first kind of became

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chronically on my teens and like I was, you know, a young man going through puberty. And I was like,

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I was like, I want to be this big strong man. And I was, I think I was training in karate at the

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time. And I had these dreams of mastering like five different martial arts and being a stunt

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actor and all these things. So I think at first there was that, will I be able to achieve that?

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But then it was also like, how am I going to be perceived by everyone, like including my family

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as someone growing into a young man who at that point wasn't amounting to what people told me

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I had to be. And I think as time went on, then it was more independently like,

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what of the things I've said I want for myself, can I still do? And my fear was, I guess generally

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just like my brain accrated giving those things up to not having a good life. And it took me a

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while to be like, okay, maybe there's certain things I can't do or certain things I can't do in

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the way I want, but there's other things I can do. So it doesn't mean just because I might have to

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let go of things that I can't enjoy my life. It just means, it's like you said, just have to like

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live life differently.

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How do you think you guys got to that spot? Because I didn't really have the experience of being like

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maybe non-disabled beforehand. And from what I've heard from some people who are non-disabled

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beforehand, they kind of have more of that internalized ableism than people who necessarily

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weren't. So like you mentioned, you reached that spot and you did as well. Like how were you able

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to get there then?

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I think for me, it's learning new joys of life and all like keeping the joys I had,

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but just do again, doing it differently. Because like for me, I think like, and a year into like

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after my diagnosis, I was kind of trying to find myself and then COVID hit. So from there, it was

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like, okay, well, I don't have socialization because that was something I was realizing that I kind

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of did need. I still need my friends and I feel like when I'm with my friends, I'm more myself.

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I can still be me. That's not, it, regardless of my disability, I still, I'm still have that

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personality inside myself. But when COVID hit, I was like, okay, well, what do I do now? And

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for me, it was finding other people with chronic illnesses and disabilities online, like on

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Twitch or Instagram or stuff like that and being able to talk about stuff. And I was like, oh, yeah,

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people relate. I'm like, okay. And it's also seeing people as well, because people are obviously

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posting online. And I think, again, seeing people with mobility aids or people who also have like

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symptoms that I have and not feeling like you have to not feeling like it's a bad thing. Like,

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yeah, sometimes I'm gonna have to just be in bed. Some days I'm just gonna be in my pajamas. Like,

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it's okay. That is an okay thing. And I think seeing people talk about it made me like, okay,

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this is fine. This is not wrong. This is just me now. And that's how I kind of gradually,

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over the years, have kind of just kind of just accepted like, this is okay. Like, this is fine.

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Like, I can, I'm still, you know, I'm still here. I'm still doing great stuff. So,

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me five years ago, I can tell like them, yeah, you didn't, you didn't fail. You definitely did not fail.

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I think I relate to that. And for me, I think again, it was like the pandemic where I ended up

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pretty ill in the pandemic and I was separated from my friends. And I remember just having this

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moment where I said to myself, like, I just deserve to be happy at any point. And I don't want to reserve

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the prospect of happiness when I'm at my best. And that then got me to a point where I was like,

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you know, in bed, I was like, if I'm in bed and I can't do much, what will make me happy? Will it be

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just binging something on Netflix? Will it be just looking outside staring at my God? And will it be

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culling with my dog? It was, I think redefining almost everything in this, this new kind of

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experience and being like, okay, but I can still have these feelings because I think it was like

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the end goal, like I can have joy and I can have love and I can have belonging. But it might just

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mean that the way to get there is different. But from there, I kind of just wanted to go on to

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a next question. And here's another finish to sentence, which is for me, Black disabled joy is

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freedom. I feel like it is just truly being free in yourself and like

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free in yourself, free to do what you want to do with no limitations, not feeling like

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the society's limitations are truly your limitations. And you know, you be happy in

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yourself, be happy in your skin, you know, embracing what makes you different because

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I feel it is a good thing to be different. It makes you unique in your own life experiences.

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So I feel like, you know, having that freedom that I can just, I still can do whatever I want.

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So yeah, I said freedom. I'd say for me, it probably is an embracing of our culture.

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And I think in order to do that, you have to kind of grip your mindset, which I think is a little

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bit what you were mentioning, where you have to let go of like the non disabled assumption that

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the way we do things is wrong. That like, I had to accept one of those ability to write my fingers

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that, you know, I can write with a pen in my mouth. And that's not wrong. That's just different.

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And feeling vibrations of music instead of listening with your ears isn't wrong. It's just

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different. And stimming and you're like everything of how we interact with the world is, it's

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different. Like we move through Crip time, it is like this concept where time moves through our

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body differently. And like it doesn't necessarily abide to like a capitalist mindset or anything,

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but it's just an acceptance of some days we lie in bed. Sometimes we struggle to do things as

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fast as one disabled people do. But that's fine. We're doing it in Crip time. This is how we do

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things. And it's just an acceptance of that. And then once you have that, you can celebrate

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disability culture and see the beauty in the different ways that we do things. And like how

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a wheelchair dancer moves across the stage, or someone can blind sign language with dance

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movements and to express their emotions. And you just embrace that and see that this is beautiful.

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And it may not work the way the rest of the world works. But that's what makes it so

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beautiful and unique in that way. Yeah.

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Oh, that's so beautiful. Yeah, for me, I think I'd say honestly, like from the get go, it is

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acceptance and it is home. And I mean, there's such a beautiful thing about being black and

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disabled, because it's like you say we have so much culture to pull from. And I have fond memories

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of like being a kid and going to parties like as I'm Nigerian, like these crazy weddings. And

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there was always someone even if it was just someone a bit elderly who maybe couldn't move

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the same or dance the same, but they were still there and they were still accepted. And that's

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something I was trying to carry forward. And it's something I've noticed now is you can still do

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some things if there's that like, safe space or accommodation. And I think especially for me,

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like with the culture of growing up, and it's being able to party in a different way, being able

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to enjoy our food in a different way, how we dress and it's really important to me as well as my

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walking stick. Like anytime I take a picture of a fit on Instagram, the stick is there,

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because that's part of my fashion now. And it's a part of me. And that feels almost like very unique

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to me and almost like unique to us, because that's not like black people been doing fashion

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forever. We're the leaders in that. So I think incorporating those parts of you, like your

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disability and especially in a sense where sometimes industries or places or magazines will

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be like, Oh yeah, you can't. It's like, you can still look really good in your wheelchair with

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whatever fit you want. You can pin part of the wheelchair. Like it's incorporating all facets

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of yourself into whatever you like. And whether that's like watching anime or whatever, it's

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all of that stuff. But moving on from there, I just want to ask like, another one is something

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that has inspired me recently is it can, you know, be anything, some music, a show, comic,

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is there anything that springs to mind? Probably then Barbara M. Allen, the film, have you seen it?

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Yeah. I loved it so much because I feel like it's rare that we learn about disability history,

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but when we do, it's from the American lens, but we have a whole rights movement here in the UK

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that people don't really talk about. So it showcased that also love the actor in it. She's

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in Doctor Who as well. And yeah, just see on a set, like all these hundreds of disabled people

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flooding the streets, you know, imitating that those protests, life just, it was amazing to see

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and it really inspired me in the fact that I was like, I want to do things like this as well,

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where I have impact and you can make a difference for our community, which you definitely can.

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I feel like recently it's more just been like, there's been an increase, maybe it's the algorithm,

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there's been an increase on my Instagram and the TikTok of seeing more disabled people doing,

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like, and their milestones, which is just always like either it's people, you know,

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getting engaged, getting married, having kids, even if these aren't really things that I personally

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want, it's still, you know, it's this general life stuff that people celebrate and it's one of

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the things to remind me, like, you know, I can still do regular things. There's nothing, there's

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no barriers, all of it's people having been given an award or, you know, they get a big deal with

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a company or they, you know, release a book, they do a TV show, they do all these big achievements,

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inspires me and it's like, okay, yeah, there's, I can still achieve, like, my milestones, like,

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even if it takes longer or after pause and stop, restart, whatever, I can still do it.

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You know, I do it differently, you know, I, it's one of the things of me reminding myself not to

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compare myself to, like, my non disabled peers who like, there'll be times in the back of my head,

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I'll be like, oh, you know, they've achieved this, they've achieved that. I can't do it the way they've

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done it because there are unfortunately barriers that stop me, but I've still done X, Y and Z,

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you know, I still graduated twice, I, you know, I've done all these good things that actually

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do make me happy and I was like, okay, so it's inspiring to see other people reach those milestones

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and it reminds me that I can still do that. That's great. I really like what you're saying about

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specifically from the disabled lens of stopping and starting because that reminds me of someone

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that spied me recently, her name's Teen Wah, she's like a YouTuber, she does video essays talking about

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kind of different topics and she, she usually does one like once a month, every two months,

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she just disappeared for eight months and she came back and she was just like, sorry, I've been

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gone, but here I am and it was almost that I've just done this and you have to deal with it that

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I really appreciated because again, like, I want to do more content and I think when I started

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and I was looking up like tips, everyone was like, oh yeah, be consistent, post every day,

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post five times a day and I mean, if one, I was like, I don't have the time to do that,

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I got to be paying my bills too, but also just again, as a disabled person, it's, we can't always

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and I think now I've been doing it for a few months, I'm realizing sometimes that I can just

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dip out and come back and people just be like, okay, cool, you're back. So I think that's been

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really nice to know that because again, we, you have to march to the beat of your own drum and that

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it is okay to march to the beat of your own drum. We're moving on from that.

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Swindy, to ask what's one thing that helps you to when you're struggling?

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Okay, firstly, parasympal. I found like my, when I'm struggling, it's normally like a day like,

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okay, this is going to be a bed bound day, we're going to just be in bed, but I make sure like,

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I'm comfortable, the best like I've put like even my curtains are drawn, so I'm not having too much

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light. I'm in my, is it snotty? Yeah. And I've got like a propped up pillar so I can, so I'm not,

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because sometimes I feel like if I'm completely flat, all my joints start to ache. So I need to

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leap propped up, but I have my water, I have snacks, I've got my iPad or my laptop and I'm

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probably either playing with Sims, drawing, watching people game or Twitch. Just anything

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that's like, okay, we're just going to do the things that just make us happy. Just, just

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simulate the happiness, even if we're just feeling really crap and, and like, I'm trying to ignore any

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pains I'm having, having, I'm just comfortable. And I think that's my main thing is like, I'm

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going to be comfortable. I'm not going to think about how like I'm going to be in bed all day and

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that might not be productive. I am being productive because I'm resting. For sure.

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For me, if I'm struggling, it's usually my mental health I'm struggling with,

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in which case family really, really helps me and my sister hanging out or just like workouts and

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exercising. I do sometimes like seated workouts that I just think as you can do from sitting in a

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chair and moving helps and reading and just doing things that I enjoy doing, but also kind of giving

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myself the space to be like, yeah, like you've accepted yourself and it doesn't mean that you're

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not proud to be who you are. If you do just have some days where you're just like, I wish this

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wasn't the case. I wish, you know, I didn't have to book taxis and like deal with taxi drivers and

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have all this and some days I just wish that that could go away a little bit and I could chill.

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And some days with my back really hurts or something. And it's like, the fact that I feel

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this pain and irritation doesn't take away from the fact that like I've accepted myself.

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Self-love isn't always 100%. You're always happy. You always feel great. So allowing yourself to

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have those dips and to just feel a bit terrible sometimes is like, just let yourself be in that

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place and know that it doesn't mean that you don't love yourself. Yeah, I'm with you 100%.

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A big shift I noticed within myself was like, when I got to that point where if I was feeling

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really in pain or really tight, I was like, okay, this is where I am now. And honestly,

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like a big part of that was I don't work full time anymore. So there's not, I noticed without that

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external demand to perform or be whatever. I noticed how much more I didn't care about it. I'll be like,

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oh, okay, I'm in pain. That's my day now. And I think just having that acceptance usually means

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that even when I'm struggling physically, I can just, I have a lot more patience with it and

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tolerance. And I think for me as well, like I usually spend a lot of time inside partially

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because I'm a hermit, but partially obviously because I'm in pain a lot. So I focus a lot on

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simple little pleasures that are around. And I started gardening last year and I've got some

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potato plants growing now. And like I talk to them most days, I go to them, I check they're

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all right. And it's one of those things where I just spend time staring at them and marveling at

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the beauty of nature. And it just helps take me out of it. Because I think sometimes like if I'm

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feeling really bad, I feel very like wrapped up in my own world and my own suffering and sense.

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And sometimes just being able to step out into the garden and just look at these things and be

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like, I can still enjoy this. And I think the beauty of nature is that it's always going to be

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around. Like I'm like my potato plants was going to be here, there's going to be birds singing all

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the time. Fox is like barging into my garden or something like, okay, don't come closer. But

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do you know what I mean? There's all these things that I can always have access to because before

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I always wanted to be out or be with people. And sometimes these things aren't possible, whereas

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my garden is always there and nature is always there and stuff. So that's, I think, yes, it's

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something that's really helped. I wanted to ask if also how your process has evolved over time in

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terms of like self care and taking care of yourself and like we're talking about struggling, is there

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anything that you've changed over the years or things you've shared and been like these practices

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aren't for me? I used to tackle things in kind of an unhealthy way where I would stick to a really

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strict schedule. And if I was following that schedule, I was being very productive. And usually

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I'd be happy as well because I'd be getting things done. But then all it would take is just a day

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not doing the schedule or not following everything exactly correctly to feel really terrible and

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disappointed in myself. And I think I just kind of needed to let that go a bit and let myself

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breathe and let myself to have more space, more periods, to just understand and listen to my body

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more and be like these expectations or things that non-disabled people could stick to. I don't

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think I'll ever fully be able to do all those things and stick to the same schedules and just

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let that go and be like I have to listen to my body and do things my way. And that's completely

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valid. And I know like a capitalist society hates that so much. But I've just got to let that go

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and say this is what I need to do for me and take things a bit more slow here and there.

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I feel like before the self care that at least I was like being taught when I came to like my

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condition was the whole like oh but you need to get some fresh air you need to have a walk you need

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to you know just and there was a time when I felt like it helped then where I was like I I think

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probably because of COVID and for me being stuck inside wasn't actually was making me worse. So I

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did try like once a week just doing a little bit of a walk and that did help like because it became

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a routine and I know once it becomes a routine it doesn't it's not as bad. But I think I'm now at

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this stage now where I know for me the idea of like you know it's basically like light exercise

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that isn't it doesn't work for me that I just really it just doesn't work for me if I you know

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if I do that it will work for me temporarily but I will have the onset of my fatigue and my pain

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afterwards and then I'm like okay well I've just done self care and it's actually not cared for me

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very much. So it's the it's learning what actually helps me and benefits me in the long term.

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Yeah for sure. So for me like it's the smallest thing of like me just having water by myself like

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a big jug of water because I know for me when I'm feeling like really really low even mentally or

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just like physically it does help. I don't know I don't know what's what in water I know what's

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in water but the H2O it works and I do feel like oh okay like it and I don't know what it is but it

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does just perk me up but also it's become a routine that I do need I just need the water I will refresh

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me and even small things of like even if I'm even in my bed for a long time I just make sure that

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I'm just doing like little exercises like you know it's like hand and wrist just to make sure

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I'm not cramping or anything like that and it's small and it's for me it is still self care because

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I'm burying myself so it's just knowing that this is this is my self care that works for me and not

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taking what someone thinks would work. Yeah because doctors can recommend things but like

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not all experiences are like a monolith but also it could be tricky with like

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diagnosis and things like do you do you all have like a diagnosis for your condition? Yeah

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sometimes they can be hard to get and sometimes you could be put into different categories and

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things like that which could be confusing I mean technically mine is like serious progressive

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external polo neuropathy which like if you google you get nothing and I've talked to so many people

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in line in person never seen anyone else with that condition and it's just with diagnosis and

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like we recommend this for this it can get difficult but also with like even little things like going

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for auditions where they're so specific they ask for like cerebral palsy or Down syndrome or like

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the conditions that have a name like someone like me will never be able to go for those things because

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I don't have like a diagnosis that's like no one's going to have like open audition for serious

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progressive external polo neuropathy so it's like sometimes it helps to be more broad and to accept

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that like experiences are on one of the lifts and like some categories in groups are great

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like if people say we recommend these exercises like you were talking about for like wheelchair users

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with this kind of condition and like social clubs for like wheelchair users or deaf people

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or things like that but when it gets really specific it can kind of almost be alienating

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yeah because then you don't find those people so yeah yeah it's tough because I feel like

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I think a general everyone wants to categorize things and yeah with disabilities and this

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includes just general public but also doctors like there's kind of ones that everyone knows about

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and then it trickles down into stuff but it's still a lot of people need to come to understand that

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like because I think you have chronic fatigue syndrome yeah me too and our experiences could

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be completely different things that could help you might not help me vice versa and like I also

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have Crohn's disease and when I first started trying to understand that I was finding other

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people with Crohn's and honestly only looking at people who were like assimilating better if I'm

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being real like there was this one guy followed who was like really muscly and went to the gym

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and I was messaging him for tips and he was like eat this and eat that and I ate that and I was like

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okay my stomach's hit no and I think from that point it took me a while to with self-care it was

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like you're saying I had to have my own personal brand and it was just I think sometimes I look at

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my body like a machine and one that I do love but it's just this works this doesn't work and

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that's that's all it takes and it takes trial and error but from there for me it's just been

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whatever can help like I take lemsip for pain usually because that that just happens to be

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the thing that helps and again there's like I don't know what the science is the same with

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you and like your water but it's just this helps therefore I do it and I think especially now

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because self-care is a bit kind of like monetized a bit where everyone's trying to say okay we're

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going to sell you this self-care and that self-care I'd like I love my bath bombs and I love my

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face masks but it's like you say sometimes for me self-care is just stopping sometimes it's

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wrapping up in my duvet and get my partner to wrap me up so I can't get out because that sensation

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feels good I think it's that taking a step back from the world and then learning what your body

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needs and what your body likes and just understanding that and I think it's easier to do that without

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that almost like external yeah this you need to do this for your condition and you need to do that

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it's just like I just I have to do this for my body and that's kind of it isn't it yeah you mentioned

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that you knew someone else with your condition do you feel like you guys in general know like

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lots of other disabled or like black and disabled people as well

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no no many I mean obviously that event we did was probably only time

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I've met someone who's black and disabled but other than that I've probably only met one other

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person in real life who has chronic fatigue who had chronic fatigue syndrome but they

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were cured they they got better they had a surgeon and then they got better and now they're you know

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that and it was one of those times where I was like I kind of wish I maybe had not known about

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this because then it's like okay now everyone knows that we're two people who have had the same

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thing but this person has like basically come out here and now there's a pressure I'm like oh so you

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know you can get better you can and I'm like I don't want to say it is a bad thing but it's like I

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don't think that's gonna be me but that's not a bad thing yeah like I'm just mean right now I'm I

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don't need a cure I it's not it's not it's it's a way of I just need things to be accessible and

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let me be that's it for sure that's it so yeah I don't know many people unfortunately

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I feel like I know a few people like online I don't I mean my best friend is only because like we

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both met when we were both like able-bodied years ago through Comic Con then I got disabled

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and years later she ended up critically ill as well which is why it's like out of all my friends

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out from my teen years she's the only one like I'm tight with and I'm like okay because we get it but

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more than just knowing people online I think if I go to an event and there are other people like

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even if they have invisible disabilities like I think I have like a sixth sense to find my people

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now and I think there's because I was talking to someone recently I went to this it was like a Black

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Fae picnic where we all dressed up as fairies and I found I just started talking to a couple people

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and then when we got real they both we started talking about disability and I was like oh so

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this is why I gravitated towards you and I think there's something it's hard to articulate but you

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kind of understand because the reality is especially being Black and disabled there's

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quite a heightened level of intelligence and smarts and awareness and empathy I think we have

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to have to maneuver through a world that isn't built for us so I think usually yeah when I go to

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certain spaces I'm always surveying I'm like there's got to be at least one other person like me here

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even if I don't know them just feeling that someone else is in for them to let me know yes

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I can stay here I can have a good time like if I'm the only one in the room I'm like okay maybe

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I'll stay for 10 minutes but I've got my eye on the door you know so yeah I think

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it's the thing though isn't it connected with people online is just the best way especially

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for us because there's so few of us there is I think I've had the experience where it's much

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easier to meet disabled and queer people and I meet tons of disabled and queer people like there's

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there's such a large number of us in the community that happen to also be queer I think there's some

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kind of link there but yeah I'm the black and disabled is something you see slightly less

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I think I only have one really friend I think I identify as like brown and disabled and queer

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but yeah I had that experience too I went to like this butch fem picnic which was really inclusive

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of like including trans people and well just lesbians like it really is just anyone who feels

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like they fit the butch fem type but then I was the only one who like I don't know I could see

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who's disabled and the vibe was so often weird and it was no one approached me yeah I felt so kind

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of like even though we have like two things in common even the black and the queer thing but

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there's this other thing and it's just like it can never be sometimes it's frustrating when

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you get treated that way but I feel like I'm much more likely to be accepted and treated

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without ableism and queer spaces I felt like they kind of get a little bit I think anyone of any

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minority group like you said tends to be a little bit more resilient because you have to face so

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much discrimination and that tends to make people more resilient but at the same time like being here

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with like you too is such a great experience because yeah it is rare and I think also it's not

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just black and disabled it's also black women as well which is great.

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I've got a big juicy question for you too how have you found it trying to form and maintain

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like meaningful relationships people as a black disabled person? Tough you know it was like it

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felt like a chess match when I started to join dating sites they're trying to like balance

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everything was tough because especially on queer dating sites um these the ones I used they weren't

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there many black people or disabled people and so I first started out with you know not having

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my profile I was disabled and kind of I called it rolling out of the closet to people after they

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got to know me more um which didn't end up going well so that I had it on my profile and then what

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I had is there was no one swiping on me I actually swiped all the way through to the end of Bumble

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Bumble said there's no one left within like an age right as long as we could show you it's like wow

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so what I do and I do defend this is I don't say that I'm disabled on my profile and I do

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eventually tell people just because I think there is so much you know ableist assumptions people

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have in their mind when they see a disabled person and like without knowing it almost every non-disabled

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person has that it's so intense that when they meet me and they speak me and they get to see

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them just like a normal person all of that goes away yeah and then I say I'm disabled and they're

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like oh that's actually okay but I feel like still if they were just to see me and see me

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disabled with my hands my wrist fingers in wheelchair they would have swiped so I think if we lived in

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a society where I wasn't ableism everywhere I would have that I was disabled on my profile

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but because we don't I don't I kind of defend that decision but people have been nice afterwards

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and I've had some meaningful connections which has been great and I was surprised by how cool

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people were with it and after they knew and so that's been great especially also in the queer

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scene as well dating I feel like the beauty standards can be a lot higher and like the gay

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and lesbian community so that was tough to deal with but I've made some good ones how about you?

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So I it's kind of interesting because like I've kind of had the spectrum of like dating before

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and after and more so just kind of like before my diagnosis I already had this kind of the

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back of female of like knowing this perception of me as a black woman and and and dating and

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trying to find relationships because for me especially in the very like white dominated

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like society it's kind of like okay I either I don't feel as pretty or there's like a fetish

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attached to it but then once I was disabled then that almost became like the the the cloud

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across people's eyes it's ended like two I don't know maybe three of my relationships

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and when it came to dating apps when I didn't say or show any pictures of my my age or anything

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like that I just got like I guess like a normal amount of swipes likes whatever as just a black

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person on there and it was only when I decided to actually know because when I meet people I'm

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even gonna have my cane or my walking stick so normally I would say like oh yeah have Emmy so

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just means but I always say I have Emmy so this just means right so they don't start to see you

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anything but then I just started adding my picture as like the first thing because for me I was just

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like at this point now it weeds out anyone who I don't want to bother with and then the people

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that actually can see past the aids and can see the person okay I can give you a chance

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but it's kind of just gotten to that point now where I don't want to be seen as someone who needs

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help and needs a carer because that's not what I'm looking for I can do these things on my own

379
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I'm already doing these things I you know I just want everyone else wants us just like love and

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and you know partnership and stuff like that so it's kind of gone to that point now where

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I I'm just doing life and if anything organically happens for me I think the data actually just

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they just don't mentally they just don't do good because you just have this you know you're not

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getting as many likes if you if you adapt your if you change your pictures or your description so

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it doesn't mention something then you see an increase you're like oh okay it's like and at this

385
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point it's just like I'm just living my life I'm not going to cater to someone's prejudice

386
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I'm just going to do me and if someone can see past that then you know I'll see what happens or

387
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thing but now I'm just like I just need a cat yeah I just need a cat.

388
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Cat's always just going to treat you how it wants to at the end of the day it doesn't matter if you're

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disabled or not um yeah I think you know it's funny because I've been with my partner for six years

390
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and so before I met them I didn't I didn't have a diagnosis of CFS and I wasn't suffering as much so

391
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I was like completely like invisibly disabled just because I had Crohn's disease and I think

392
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for me then it was hard navigating it because if you look at look to me on the dating app like

393
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you couldn't tell and it is also then I had that struggle of bringing it up but it would say it

394
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all over my Instagram and I remember like hanging out with a guy and he we followed each other he

395
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saw I had Crohn's disease on it didn't say anything and then later on he gave me his phone to like

396
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look at a recipe or something and then I seen he had like Crohn's disease open on Wikipedia

397
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I remember being sad they're like why didn't you just ask me and I think that really almost summed

398
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up in a way I think especially like the English culture of like never asking these things and

399
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then when I met my partners so funny because we we met on Grindel so I was like this is not going

400
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to go anywhere but they were I was cancelling a lot because I was quite ill at the time and

401
00:40:11,680 --> 00:40:16,640
they were just chill and they rang me up and asked what's going on and I told them about it and they

402
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just like were unfazed and I remember being like so confused like my brain could not handle it I was

403
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like someone being decent about my chronic health like but I think even just in the realm of friendships

404
00:40:30,000 --> 00:40:36,720
and stuff I think I felt like loads of people will do anything to avoid acknowledging that you're

405
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disabled and sometimes because I've had loads of confrontations with people because I'm not

406
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doing a Jamaican I can fight like I pull it up and they're like oh well I was waiting for you to

407
00:40:48,400 --> 00:40:52,960
say it and I was just like I think I never understood that because for me as a friend or as someone who

408
00:40:52,960 --> 00:40:59,040
cares you ask about anything and I remember eventually coming to a point where I said I think

409
00:40:59,040 --> 00:41:03,920
at this point if someone cares they will ask and then last year I met like a new friend and the

410
00:41:03,920 --> 00:41:07,360
first time we met up because we've been talking all night and he was literally just he saw my stick

411
00:41:07,360 --> 00:41:11,280
and he was like you're okay walking from here to here do you want to walk so I want to do this

412
00:41:11,280 --> 00:41:18,320
UK ink this and it really reaffirmed in my brain that belief that the people that matter and that

413
00:41:18,320 --> 00:41:24,000
do care will show it without you having to do anything so that's again especially with friendships

414
00:41:24,000 --> 00:41:29,440
how I try and live now it's like I'm not going to entertain anything unless someone's showing like

415
00:41:29,440 --> 00:41:34,160
an active interest because it's also I think for me like I said my best friend she's got

416
00:41:34,800 --> 00:41:39,600
endo and whenever we're hanging out it's you know is this place okay for you can you eat this you

417
00:41:39,600 --> 00:41:44,560
need somewhere with better seating I was like I can do that if I can just ask these questions

418
00:41:44,560 --> 00:41:48,800
even though obviously I don't understand what it's like to have endo and I never will if I can just

419
00:41:48,800 --> 00:41:54,640
just make her feel like she's been listened to and heard and asked those questions than anyone can

420
00:41:55,120 --> 00:42:00,160
and I think that's a rule of thumb I always tell other disabled people to have because it

421
00:42:02,480 --> 00:42:07,440
if I'd had that point of view five years ago it would have saved me so much like wasted energy and

422
00:42:08,160 --> 00:42:14,160
you know busted friendships because I think it is it's an unfortunate fact about a lot of people

423
00:42:14,160 --> 00:42:21,200
and a lot of people can just get away with not asking and pretending that disabilities don't

424
00:42:21,200 --> 00:42:27,200
exist because it doesn't affect them you know might one day but not now but from there I wanted to ask

425
00:42:28,880 --> 00:42:33,760
how can we find a sense of community when we're such an underrepresented group like we're black

426
00:42:33,760 --> 00:42:39,280
and disabled there's not many of us especially in this crazy island with a lot of rain so what

427
00:42:39,280 --> 00:42:45,280
how do you find finding it and what do you do it's tough I think the internet really helps

428
00:42:46,160 --> 00:42:53,120
and I know I really struggled before I had met someone who is disabled especially black and

429
00:42:53,120 --> 00:42:58,560
disabled because I mean you're talking about friends and friendships and things like that and

430
00:42:58,560 --> 00:43:04,080
I had really negative experiences because I experienced being disabled in secondary school

431
00:43:04,080 --> 00:43:10,480
in primary school and the teens in secondary it was very much a just ignore thing and I was

432
00:43:10,480 --> 00:43:17,680
ignored so much I would do things like play these games where I'd walk down a hallway with tears on

433
00:43:17,680 --> 00:43:23,120
my face and you know big bets with myself if anyone was going to stop and say something

434
00:43:23,120 --> 00:43:26,960
or I'd count the amount of words I said in a day and like it'd be less than 10 or something

435
00:43:27,600 --> 00:43:31,520
and I did have some people there that were great but I lost so many friends when I had to become

436
00:43:31,520 --> 00:43:37,440
a permanent wheelchair user and it was just the worst experience ableism from teachers and from

437
00:43:37,440 --> 00:43:45,680
students and it did that play so much and so by now that I've moved to London I really only have

438
00:43:45,680 --> 00:43:51,040
disabled friends it's such a different experience and their friends like you said you can ask those

439
00:43:51,040 --> 00:43:57,520
questions too and they kind of they just get things that no one's really like gotten to the same

440
00:43:57,520 --> 00:44:02,000
degree before like I've been shocked by like how they're like oh yeah I've experienced that too

441
00:44:02,720 --> 00:44:09,040
I'm like wow so it really was like online well I guess I found most people through like work because

442
00:44:09,040 --> 00:44:14,240
I do a lot of work with disability groups but just even online communities you can find so much

443
00:44:14,240 --> 00:44:20,160
validation through them and like in not every school these horrible as mine was and all non-disabled

444
00:44:20,160 --> 00:44:26,400
people never get it and actually terribly but sometimes it really is good to just find those

445
00:44:26,400 --> 00:44:32,960
spaces and those people who just kind of do instantly get it without all explanations so I'm

446
00:44:32,960 --> 00:44:37,280
very glad that I'm no longer in a place like that where I felt like every day was one of

447
00:44:37,280 --> 00:44:42,720
those days where I was having to explain things or feeling really left out just because of who I was

448
00:44:44,880 --> 00:44:52,960
I'd probably say the same thing like the internet for me is probably the only place right now where

449
00:44:52,960 --> 00:44:57,680
you know the sense of community is the easiest way it's just also it's just accessible I feel

450
00:44:57,680 --> 00:45:04,000
like that's another thing I'm realizing that I'm I use the internet probably more because I'm like

451
00:45:04,000 --> 00:45:10,400
I'm at home or I can't physically go to places as often because I need to reserve my energy and

452
00:45:10,400 --> 00:45:16,480
it's just it's easy to create these communities because you know it's for the most part most

453
00:45:16,480 --> 00:45:20,720
people have their phone in their pocket or you know they'll they'll they'll be at a screen at

454
00:45:20,720 --> 00:45:31,440
some point so it's just easy to connect and like create events that just include everyone in some

455
00:45:31,440 --> 00:45:35,840
kind of way like a lot of times I just really enjoy like doing like game nights online it's just

456
00:45:35,840 --> 00:45:40,720
you know even if it and it's normally also like doing games that it's still easy forever or nothing

457
00:45:40,720 --> 00:45:45,280
yeah there's no inclusion in some kind of way like I don't know it's like there's a game called

458
00:45:45,280 --> 00:45:49,600
like Gartik Phone where you just get a prompt and you draw it and then something like so it's

459
00:45:49,600 --> 00:45:58,480
it's easy it's funny you just have a laugh and I'm more and more I'm gravitating towards

460
00:45:58,480 --> 00:46:03,680
online communities which I kind of started to steal away from as I got older from a team because

461
00:46:03,680 --> 00:46:09,200
I grew up online I grew up on Tumblr I got all the on and I was just like I you know I'm now

462
00:46:09,200 --> 00:46:14,560
I'm an adult I should probably talk to people in person now and I got used to that and now I'm like

463
00:46:14,560 --> 00:46:21,920
okay this is this actually works better for me and I can connect with my friends more

464
00:46:21,920 --> 00:46:28,640
yeah I think I'm the same definitely like online there's just so many online spaces and Facebook

465
00:46:28,640 --> 00:46:34,320
groups and I think I've also noticed like I've been trying to be way more politically active

466
00:46:34,320 --> 00:46:40,480
over the past few years and I think especially marry activism with my life I don't want it to be

467
00:46:40,480 --> 00:46:45,360
something I'm like oh let me drop in it's like how do I fit this in into almost like the fabric of

468
00:46:45,360 --> 00:46:52,880
my existence and I'm noticing maybe like politically active spaces tend to have better disability

469
00:46:52,880 --> 00:46:58,960
politics and I think for me then it just means that certain spaces or things it's that understanding

470
00:46:58,960 --> 00:47:03,520
like oh okay I there might not be people like me here but I will be welcome and safe here

471
00:47:03,520 --> 00:47:09,200
and kind of having that expansion I think I'm really lucky that because my partner is able

472
00:47:09,200 --> 00:47:15,040
bodied it's just really good my health and my cousin's able body too really great like I just

473
00:47:15,040 --> 00:47:21,360
happen to have these people most like fall around me but online still is something I rely on and

474
00:47:21,360 --> 00:47:25,600
even something I think it's like you're saying sometimes you're just seeing another black disabled

475
00:47:25,600 --> 00:47:31,920
person being online we don't even have to interact but seeing them living their life online just doing

476
00:47:31,920 --> 00:47:36,640
whatever even if it's just you know I made dinner tonight or I went for a walk I think even just

477
00:47:36,640 --> 00:47:42,400
seeing people do the mundane makes me feel very connected and I always feel like there's this like

478
00:47:43,040 --> 00:47:47,200
I feel like like what's that the hunger game salute they do like we do that across the internet

479
00:47:48,560 --> 00:47:53,680
I think just seeing people live in their lives and they sometimes they share about a struggle

480
00:47:53,680 --> 00:47:57,200
they had but then there's also sometimes it's just like yes I got back and I got take away or

481
00:47:57,200 --> 00:48:03,440
something I don't know it's just that honesty of their life I really appreciate but I just wanted

482
00:48:03,440 --> 00:48:11,680
to close with one final question I just what's one thing you would say to like a young person who

483
00:48:11,680 --> 00:48:17,520
shares your disability I'm saying young like I know 10 years younger it could be you it could be a

484
00:48:17,520 --> 00:48:20,800
young you or it could just be someone you know going through things that you might have gone

485
00:48:20,800 --> 00:48:31,200
through what would you say I would probably say it's okay to have the struggle it's okay

486
00:48:31,200 --> 00:48:40,080
that things are hard it is it obviously it's it's it's one of those things of remembering like

487
00:48:40,080 --> 00:48:48,160
you're allowed to also grieve and you know just coming from someone who you know did have you

488
00:48:48,160 --> 00:48:55,120
know you do grieve your past life and for me if there's anyone that has like a chronic illness

489
00:48:55,120 --> 00:49:00,880
that's quite similar to mine it would be like you are allowed to grieve and there's not one you

490
00:49:00,880 --> 00:49:07,360
know grief in in any kind of way it's not just there and then it can have happen again five years

491
00:49:07,360 --> 00:49:12,960
you've accepted but you know you'll get you might get another part where you're like ah I do miss

492
00:49:12,960 --> 00:49:20,640
this though it's okay to you know you can still be on the right track you know the the new path

493
00:49:20,640 --> 00:49:25,200
but it's okay to be like okay but I still do miss this and I think it's about allowing yourself to

494
00:49:25,200 --> 00:49:30,800
feel whatever your body's to allow yourself because I think being able to grieve you can process it

495
00:49:31,440 --> 00:49:36,960
and then you can use that process to that's okay I have felt like I've lost this but what have I

496
00:49:36,960 --> 00:49:43,360
gained what am I gaining now it's a new perspective I'm getting it's uh it's you know it's a new

497
00:49:43,360 --> 00:49:48,880
dress sense because I have to adapt my mobility ace in my fashion it's it's those sort of things

498
00:49:48,880 --> 00:49:56,160
so I would say yeah like allow yourself to grieve whilst also knowing that you can embrace this new

499
00:49:56,160 --> 00:50:04,080
you I'd probably say to little simi just know that things are possible there're going to be so many

500
00:50:04,080 --> 00:50:09,840
things that make you think things aren't possible you will be kicked out of theatre club for being

501
00:50:09,840 --> 00:50:15,680
disabled when you're 12 you know the film course will be able to enforce you to strap a camera to

502
00:50:15,680 --> 00:50:21,920
your head for not much reason and that will make you think it'll make you give up on your dream

503
00:50:21,920 --> 00:50:26,640
but I would just say to keep fighting for it because you can be a performer you will be one

504
00:50:27,360 --> 00:50:31,920
and that even though you don't see it on screen you don't see people like you you will be that

505
00:50:31,920 --> 00:50:36,640
person in that space that other people will then see and then know that it is possible as well

506
00:50:37,360 --> 00:50:43,360
so if you don't see it there then go and be that change and be that light and don't let anyone

507
00:50:43,360 --> 00:50:49,840
know ablest teachers or no one who just doesn't understand you in the way that you are tell you

508
00:50:49,840 --> 00:50:55,200
that you can't do something because you are powerful in the way that you do things it's

509
00:50:55,200 --> 00:51:02,720
different but it's unique and don't listen to the people who tell you that it's wrong the way

510
00:51:02,720 --> 00:51:09,600
it's okay get a bit emotional because I'm you're facing much of it but just know that at the end

511
00:51:09,600 --> 00:51:18,320
what it will be is a transformation where you realise that it's uniqueness yeah that's amazing

512
00:51:19,040 --> 00:51:22,800
yeah I would just say to young me or anyone else young that

513
00:51:24,640 --> 00:51:30,880
there is always a way that you can adapt things to do things for you I think the world often is

514
00:51:30,880 --> 00:51:36,960
like no you can't do that no I don't want to do that and like I feel like the past 10 years of my

515
00:51:36,960 --> 00:51:43,120
life has been understanding how much of that is just people being ablest and horrible and lazy

516
00:51:43,120 --> 00:51:48,240
there's a lot of my hobbies that I've been able to transform to work for me now and there's been

517
00:51:48,240 --> 00:51:55,040
ways I've been able to work that work better for me now I think it's it's going to be a tough journey

518
00:51:55,040 --> 00:52:00,800
and there might be a lot of kind of advocating for yourself but also you have every right to be

519
00:52:00,800 --> 00:52:06,240
like I'm tired of advocating for myself let me just stop I think there's nothing wrong with that

520
00:52:06,240 --> 00:52:12,160
because it is it's quite a lot I think and especially like being black and disabled sometimes you

521
00:52:12,160 --> 00:52:17,200
might feel like you're the only one in a space so I think you're entitled to whatever you need but

522
00:52:17,200 --> 00:52:22,240
you're also entitled to step away and I think the greatest gift you have is being able to

523
00:52:24,240 --> 00:52:29,600
imagine something that a lot of people can't imagine I see I've seen throughout history

524
00:52:30,160 --> 00:52:33,920
black disabled people be at the forefront of movements and imagine new worlds for us that

525
00:52:33,920 --> 00:52:39,200
loads of people said couldn't happen and I have no doubt you know my kids and my kids kids are

526
00:52:39,200 --> 00:52:43,920
going to be able to benefit from things that other black disabled people doing now that we're

527
00:52:43,920 --> 00:52:50,000
doing now and I think there's such a beauty and a power in that and there's also such beauty and

528
00:52:50,000 --> 00:52:57,680
power in just choosing yourself when so much around you says you can't and even when choosing

529
00:52:57,680 --> 00:53:03,040
yourself it's just choosing to step away that's incredibly radical and powerful and I think there's

530
00:53:03,040 --> 00:53:09,920
so much beauty in the small things that we will do and to embrace that yeah so we've come to the

531
00:53:09,920 --> 00:53:14,720
end of today's conversation I want to say thank you so much to you both for sharing it's been such

532
00:53:14,720 --> 00:53:19,440
amazing experience I'm trying to keep my tears in because I don't want to cry it's been really

533
00:53:19,440 --> 00:53:34,400
really nice and thanks so much for our listeners yeah it's been really great so thank you thank you so much for having us