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The Lunch Discussion - Hidden Strengths: Honest Conversations on Disability · The Discussion Podcast

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This is The Late Late Lunch Show with Rod Maxwell.
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So today on The Late Late Lunch Show, we're continuing our discussion on disability,
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which we started on Monday with View From The Street.
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And with me today is the View From The Street journalist, Mr.
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James Spencer, and a friend of his, Jamie.
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And we're going to talk about this and find out our own experiences of living
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with disability. Guys, how are you?
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I'm doing really well thank you very much,
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james i think this is the first time we've ever done one of these on zoom,
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yeah i'm used to seeing on instagram you smiling and laughing people i'm like
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a little bit jealous thinking oh how can i never get this treatment,
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well there you go we're doing it today so on on monday james we were talking
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about the whole topic around disability and people's reactions to that and,
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what was your takeaway from our initial discussion on Monday?
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Yeah, just yesterday, that was good, I enjoyed that. My initial takeaway was
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that more people were more informed than I thought they would be,
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they cared more than I thought they would care.
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And I think that we have consensus that things have improved from what they
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were maybe 20 years ago in terms of knowing about disability awareness.
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But I think we agree that there is a lot of improvement to be done.
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So from my point of view, I have been, I guess, technically classed as disabled
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for the last 10 years with, I guess, brain injury, memory loss,
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which means that I can't work.
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Now I've sort of chosen not to focus on disability because I take a different
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I try to probably mask it more than I should but it's the way I've learned to live with it.
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Jamie what is how is your disability defined and how do you what's your comfort
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of that word disability?
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Well I don't want to say it as a disability,
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even though it is, but, so mine is new divergence, which means it's autism mixed
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with dyscalculia and I guess the literacy and some other things.
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So there were some things where I don't understand.
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But yeah, the way I see it is like, I'd rather see it as a superpower where
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I can memorize or know lots of things.
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But like there may be some things where I don't know. So I have a strong state
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of things, but there's a minor things I don't really know.
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So I see it's more of a power than a weakness. Yes, I see.
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You invert it, you reverse it basically and see it as what it's positive for
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rather than what it limits you.
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I understand that totally james from your point of view.
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What when you do you class yourself as being disabled or what's the tag that
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people put around the the behavioral traits you have so,
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i think i do have a mental disability i think autism has that and the dyslexia
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i think i'm really slow so if someone tells me something immediately and then
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i was like what do you think,
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i don't know because i need some processing time so it's going to take me a
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little bit of time to get my head around stuff.
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So I'm pretty slow. People do describe me as intense. People describe me as
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being the connector, the social connector of the group to bring people together.
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And I think I'm quite extrovert in that sense, but I think I'm also easily overwhelmed.
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So I don't have the same capability and capacity as other people.
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And I think I don't like to be bombarded.
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So I basically just want to do one thing at a time, take things in small bite-sized
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as chunks and yeah, I don't want to be overwhelmed.
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So I think people demand more from me than they think that I'm capable of.
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And I think because I'm so articulate and my vocabulary and this kind of private
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school education hasn't actually done me any good because people then think
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that I can work a hundred million miles per hour, just like they are.
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And I say to them, slow down, stop, stop, stop, stop, slow down.
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I think this is the thing, that there's a lot of disabilities that can easily
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be masked, that you can either work around or purposely mask.
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And I think that's because, at least I find, it's my best way of living with it.
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I don't want to be reminded all the time, but then there are certain limitations
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that I have that mean that I become very annoying very quickly.
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Um, and, uh, and, and then the person, no matter how compassionate they are,
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can sometimes struggle with that. Jimmy is, has that been your experience at all?
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Yeah, sometimes. There's been some cases where it's been like that.
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And I mean, especially for James here, it's been a few times,
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but I could both forget sometimes. And then people will just be like,
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why can't you just remember?
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I wish I could. I really wish, but I don't know.
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Some people do see it as an annoying thing that I should get better at it,
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but i am trying to get better at remembering things as best i can,
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yeah so but i'll take a break and i want to talk about what are the practical,
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impacts restrictions limitations of the different disabilities that we all we
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all have to bring it to bring it to life so today
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it's part of our series on radio all day we're talking to james spencer and
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to to jamie we'll take a break and be back with the guys in a couple of minutes
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time this is the late late lunch show with Rod Maxwell.
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You're listening to Radio Alty. It's the Late Late Lunch Show.
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And we're talking today about, really, I guess the topic is disability awareness.
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And myself, James Spencer, and Jamie are here to talk about our own experiences
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of, I guess, being labeled as disabled, but also living with disabilities.
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And it's a fine line sometimes that you don't want to be reminded and you don't
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want to necessarily be told you're disabled.
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But at the same time, You know, you have limitations, Jim. So come to you first
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of all, with your, your, with your autism and I can't, I have,
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there you go. My memory is not alive.
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Dysplexia.
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What are the practical realities of that for you?
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Well, the box is quite small for me. So my problem is communication and technology.
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That's what dysregulates me. So I'm okay like this. Like I'm okay in person.
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I'm okay when I know I'm in a safe, but I feel safe.
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So as long as I feel safe and I know that something's happening and I've haven't
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noticed and I know for sure that something's taking place, like meeting you,
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on Mondays at a certain time where we're going, those certainties make me feel
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safe but then when I get a phone call out of the blue or voicemail out of the
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blue or something changes,
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maybe something health related or someone cancels something that breaks my script
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they don't have a plan b or a plan c,
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so then everything just goes into panic mode and anxiety mode and I kind of
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collapse into that and allow that collapse to happen so that would I assume
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that's the meltdown or anxiety attack or increased anxiety,
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so I definitely have anxiety issues since about 2014 so about 12 years i've had anxiety issues and.
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What was the trigger what did you experience in 2014 that you realized that
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something has changed i think there was some conflicts happening at,
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uni where i just didn't like a few people that lived in the building so every
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time i saw saw the guy you know i would be frightened or scared and then i had
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the same problem with soul when,
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there were some people i thought were bullying me so i I think that those things
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triggered my past because my main issues relate to the secondary school I went to.
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There was some severe bullying at this school. The teachers didn't know that
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it was happening and they were not very nice to how they went about it,
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the children there, and they were quite sadistic with it. So because of that,
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I have trauma. So I believe that whatever's happening in the present.
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Is triggered that triggers the past so i very easily get threatened and think
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that people are trying to hurt me or they're,
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trying to attack me and hurt me but then the real reality is is are they trying
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to attack me or aren't they but my brain thinks it is my brain is just trying
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to keep me safe it's like we're just trying to keep you safe.
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And do you do you believe that the underlying reasons for,
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the triggering that happened around 2014 they were there in the past but there
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were certain things happening in your world that caused the triggers to become more acute,
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yeah so basically that stuff is under the surface so trauma the way trauma works
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is it's completely unprocessed so it's not filed away in your brain,
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so it could just be swimming on the surface so i was i had that childhood stuff
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and then it never got processed for five years so then when i have a young brain
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i went to a college that i really liked and then when i went to uni i was living
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away from home for the first time i had to live with other people
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that's when i got taken out of my comfort zone because i was living with my
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family like my mom or my dad,
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and then all of a sudden i'm going to a first uni in the second uni living with
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strangers and i felt threatened and i think the problem is is that autistic
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people struggle with transitions so to transition from primary to secondary
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to struggle to secondary to uni is really difficult
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but because people didn't know i was autistic then i didn't know i was autistic
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then people are not appreciating this transitional difficulty,
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so you hadn't been you hadn't essentially been diagnosed officially when were
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you diagnosed august 2017.
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So it was the 23rd of august 2017 so i've known for nine years so i'm 35 on,
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thursday is my birthday so that means i was
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25 26 when i found out which i believe is late for a diagnosis to go 26 years
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not knowing you're you've got autism but then in some ways you could feel grateful
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because there are some people that go their whole life not know they're autistic until they're 56
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and yet during that time when And you clearly were...
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Displaying the science of autism but it hadn't been it hadn't been diagnosed
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you were going through gcse's a levels you did a your first degree i mean was
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that really challenging or and,
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you know it must have been a nightmare um to to be questioning why you were
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behaving in certain ways and yet you were still achieving academically,
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i think it's only got worse as i've got older because I'm high-functioning autism
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and Asperger's, but I think the problem is my communication and difficulties
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relating to others, picking up,
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reading social cues, reading the room or setting boundaries,
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respecting boundaries.
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I think I struggle with those things. I could be extremely intelligent with
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politics or news or the world, but then I don't have much in terms of those
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direct social skills. I don't think anyone ever taught me those things.
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And because it got interrupted, thought processes got interrupted by those bullies
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at school every day thinking it's a war looking over my shoulder being bullied
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about not being good at football or anything.
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I think those things have really affected me to have low self-esteem and low
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confidence and be really insecure about myself because of those people at school.
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So yeah, I think that as I've gotten older, because I've had relationships and
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as with girls or friendships or house shares or jobs, trauma has then been created
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from those things. So trauma has then bounced into one to another, like a domino effect.
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Because of that, my problems are with that.
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So even if I do a job application i'm scared they're going to ring me out of
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the blue and dysregulate me i'm scared that i'm going to argue more people i'm
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scared so it's always i've got a fear because of things that happen in my adult life as well,
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so so do you think that because of a late diagnosis that you didn't understand how to respond,
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to everyday things going on around you that has created more and more layers
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of of anxiety and and confusion and and,
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that has that has multiplied the impact of your the initial problem,
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yeah i'm resentful and jealous and upset i feel like i want to relive the last
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25 years i want to go back in time 2001 when i was a good little boy outside the white house and,
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pre-1003 wouldn't have that trauma so anything from 1991 2003 obviously my parents
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divorced which is a learning difficulty for me when they're just swapping me
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over at Leicester Forest or Northampton. But I think...
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When I say jealous and upset, it's more the fact that all this SCN stuff exists now.
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But then I was supremely failed by that school. I should have been safeguarded.
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So where's all the safeguarding stuff then? And I'm also angry,
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like I said yesterday, in the sense that safeguarding doesn't exist in the adult
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world because it should do.
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And I would just say SCN is Special Educational Needs and Disabilities.
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And we'll come on to that because there's a lot more support than there would
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have been around even 20, 10 years ago. I'm going to take a break and I want
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to come back and talk to you, Jamie, and get more of your story.
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Because, James, what you did there was really bring it to life.
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And, Jamie, if you don't mind, in the next phase, we'll talk about what it's
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like for you. So today, we're continuing our discussion around disability, disability awareness.
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Myself, Rod Maxwell, James Spencer, and Jamie, we'll be back with you in a couple of minutes' time.
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This is the Late Late Lunch Show. Jamie, let's talk about your story. So.
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When was your first awareness that something was different for you?
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And how long was it before you got officially diagnosed? Right.
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So I think probably the first time I was probably diagnosed was like when I
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was in high school, I believe.
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I'd say around maybe year seven, eight-ish around that time.
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Because I think back when I was probably younger, I guess, my parents really
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didn't know what it was. And so they had to have a diagnosis and whatever.
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And so I think it was around, I don't know what age exactly,
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but I just know it's around year seven, eight.
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Because around the time, the HECL I went to had a learning space for children
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who are, what's the word I'm going for, special needs people.
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So I was in that area for a bit, around year seven to eight.
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And then after that, they actually had me have a choice where it's like,
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oh, I can carry on with them or I can go back to my own class groups and do
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normal classroom things.
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And so I decided that because I thought I was missing out on other things,
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other classes that I decided then that I wanted to leave the special needs group to be with the rest.
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Because i think for me i just wanted to make friends but yeah turn to your question
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sorry it was around year seven eight that was the time that's what we diagnosed with it,
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okay and and but had you and that's around the time you're starting high school
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is that right yeah yeah seven yeah and and but were you had you an awareness that.
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That you the way you were thinking or the way you were responding was maybe
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different to to other other kids your age oh yeah definitely because I so for
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me I struggled a lot with maths and things so,
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it definitely did bring down my grades a little bit and so I had grades like.
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C's and D's and yeah it was a little tough for some people.
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I remember one time cooking class where there were some kids who just kind of maybe,
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chatted me a little bit because I wasn't doing the best or I wasn't picking
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up the right ingredients I wasn't picking up the right tools for things and
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even like I remember the teacher was getting a bit annoyed like oh you need to cook faster or,
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we have a deadline to make this thing at this stage,
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and like I'm doing everything the best I can but it you know it does take a
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bit of time to try and learn the instructions learn how to make certain things and,
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I think even then trying to answer some questions some trying to answer the
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way people some of the kids were you know talk to me bringing friends I think
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sometimes it did make it a bit hard to,
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understand and I made it that I hated high school because it was just,
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for me, it was just pain, you know.
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So going to school every day is just pain, pain, pain.
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But, like, I think over time I did kind of mask it and just,
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like, I went to the school library and just kind of read for most of the time
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whenever I had breaks, I just got to the library because I didn't really be out there and,
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kids being like, oh, you're not very smart, you don't read this and that.
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It's like, you know what?
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I'm just going to go away and not think about what they're thinking because
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it's none of my business anyways.
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So I'm going to take a break because I want to ask about...
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It's a very, when you're, when you start high school and you're going into teenagehood,
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there's a lot going on biologically in your body anyway.
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And lots of people are going through changes. And, and I wonder whether.
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That adds to confusion of being able to diagnose certain special educational
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needs and whether that there's a natural confusion there and how you felt at that time.
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So today we're talking with James and Jamie. We'll take a break and we'll be
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back in a couple of minutes time.
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You're listening to Rod Maxwell on Radio Alty.
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So today on the Lely Lunch Show, we're continuing our look into disability.
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And on Monday, I think, on the show with View From the Street,
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we explored very well the fact that the range and definition of disability is
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much broader than ever before.
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But the question really is, is the compassion, the understanding,
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is the ability for society to help you live with a disability any better than it's ever been before?
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And today with James and Jamie, we're exploring this through their own personal experiences.
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And I have a little bit of that, but I think my situation is slightly different,
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maybe, because I've experienced my disability, which is memory loss,
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at a much later stage of my life.
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But I still think I have some of the same experiences in some ways,
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but probably easier to me in that I went through education, I've had a job,
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I'm at a different end of my life experience, I guess.
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Can I ask, I'll start with you, James.
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The, the moment that you got diagnosed, okay, and that seemed to be quite late
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for you actually, wasn't it?
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But the question I have is, was there a relief around that and being diagnosed?
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Did it start and things suddenly are starting to make sense?
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And did that official recognition help you in any way?
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I think when you first find out, it's, it's quite a shock. But in that first
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six months, it's quite liberating because then you've got something to label
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it as you have some identity.
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So there's some clarity attached to that.
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But I don't think it did help me enough because I think that I didn't read enough onto it.
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I think I wasted some years or some time where I could have found out more about the condition.
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But that said, the positive to all of this is that ever since last year when
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I had a job for two years that was a terrible job I didn't like,
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since then, a lot of fallout happened from losing that job since June last year.
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And then in this past 14 months, I've learned a lot about myself.
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So I know that I'm slow processing. I know that I take a while to get my head around something.
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I know I'm easily overwhelmed. I know what triggers me. I know what makes me upset.
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And I've understood my intrinsic self more. And I think journaling as well,
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which I've really done a lot of work on, the journaling has made me see the
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patterns in certain behaviors that people have done towards me, I've done towards them.
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And it really makes you understand yourself better.
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Can I ask though, given that you've managed to go through the whole education
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process, you got your GCSEs, you got your A-levels, you got a degree.
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What's been the big difference between being in that educational system versus
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now trying to be in employment?
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Do you think that the educational system was more empathetic,
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more supportive, more manageable than being in employment? And is it because
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employers don't understand as well?
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What do you think is the difference? Because you've been successful in education,
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but then had a diagnosis almost just after that.
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How do you think you managed to...
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Survive if you like in the educational system but it's been difficult in employment,
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i think when it comes to education i feel safer in the sense that there's a
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structure to it there's a lot of structure to a routine so there's modules and
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there's exams and there's past papers,
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so then you can get immersed in that and you can obsess with that and do mind
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maps and you can practice questions and try to be obsessed with trying to get
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an a or trying to get good grades and just do the best you can and learn the material,
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and i think as soon as you leave that that swimming pool that pond as it were
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and then they just chuck you out of uni and as you just out of the sausage factory,
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as my dad calls it that's when i struggle because i need a lot of spoon feeding
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i need a lot of help so i'm not very good when it comes to trawling for jobs
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i'm not very good at the applying or getting the rejections and stuff like that what,
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would be better is if someone just got me the job and just said look i've got
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you this job because you're good at it you're good at talking and all you need
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to do is just talk to people.
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These are the times you've got to go. All you need to do is just get your bum
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there. So that's all I need is someone to get the job for me and tell me where to go.
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But unfortunately, the world doesn't work like that.
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And so structure, routine, consistency really does help you, James.
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And predictability. Like we were saying earlier, everything needs to be predictable.
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So I don't like walking into the unknown.
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I like to know what's ahead of me. I don't like to go into it blind or go into
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the forest blind or into the darkness. I like to know what there is.
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I like to know the roadmap.
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So that's when I get anxious if I don't know the roadmap.
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And what's proven is that every Monday, we do a few from the street,
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you deal with the ambiguity of that you deal with the time pressure of that
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because we record it from 12 say to half past one by three o'clock you have the recordings ready,
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so but do you think that's because that is a process that we have repeatedly
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done you've got the format of that yeah exactly yeah,
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because there's a format to it so there's a,
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I know what to expect. So there's no anxiety, there's little anxiety around
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it because you know what to expect.
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Sometimes they get thrown off when I'm in the middle of Costa,
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for example, and then my files, I'm getting some sort of IT problems that I
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can't seem to send the files to myself and I can't edit them.
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Then my anxiety is getting super sky high because I don't want to let you down
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and I don't want to have no package.
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But then since I've deleted loads of downloads, since I go to Tesco with the
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better Wi-Fi, I've gone back to normality, it's restored.
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And I remember in the early days, cause we always used to meet at Tesco and,
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invariably you were late sometimes very late and, and, and then that,
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that throws things up now.
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And I, I used to get annoyed. Right. Uh, and then I, I had a chat with myself
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and said, well, this is, you know, I, I can be the same. I keep people late.
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I, I, I lose track of time. Things happen.
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It could be time blind. Time blind.
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Me and Jamie are experts in this. That's not true. That's not true.
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You used to be two hours late for the cinema.
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I mean, that.
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Is probably timing on the buses. I blame the buses for that.
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You blame the buses, Jamie. I like your excuse.
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But James, I guess because we now have a routine and how we do it,
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You know, you're, you're invariably more on time now than ever before.
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And, and, and, and you, you don't have any problem now with the ambiguity of
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walking up to somebody and saying, we're doing few from the streets,
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really, waltzy, can I ask you about X,
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for a lot of people that was scare them.
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That would be, that would be really difficult for them.
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You've learned is it through,
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consistency repeatability because you know that format now that doesn't,
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you're not as blind that doesn't that doesn't intimidate you anymore so if i
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haven't done you from the street we've got we've taken too long a break for
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four five six weeks then i'm a bit nervous and shy and because we haven't we're
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out of practice we need to do it every week because.
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So so there's that then if i'm doing it on my own and you can't make it even
25:53
though it's been amazing that you make it because I think your Northern Ireland
25:56
accent and your confidence and your jokes and how people
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are comfortable with you and how you're able to create small talk and then relate to them,
26:04
is really good because you kind of take the seriousness out of it and take the edge off it.
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So if I'm on my own having to get these Vox Pops, I am a little bit nervous to begin with.
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But like you say, once I've got the oil and the grease into it,
26:16
into that engine, I'm more confident knowing...
26:20
Again prepare that script okay so some people don't want to stop in the street
26:24
they don't like a stranger they don't know what you they don't know who you
26:27
are they don't even know what you want and then i know for example they don't
26:30
like to talk about things that are controversial political,
26:33
but then i also know that if they talk about christmas or music or football
26:37
they really want to chat but i was thinking today to myself today one of the
26:40
best positive things i thought was of today is i thought to myself today you
26:43
know what i really like chatting to these people in australia like you and i
26:46
do it's nice having a chat,
26:48
and the thing is you've got to remember is that,
26:51
they don't know any of our backgrounds, right?
26:54
That, you know, and, and you can almost have a veil that you always have a,
26:59
it's like a mirage of, if you like, and sometimes even just helping the microphone,
27:05
it's a bit like, it's a bit like, you know, one of the superheroes,
27:08
super strengths, that in itself gives you, gives you the edge.
27:14
And sometimes you just have to put that step forward and demonstrate,
27:20
demonstrate the positivity the confidence even that you don't have it you know
27:25
but but i appreciate that that can be that can be different but you've been
27:30
out you've been out in manchester by yourself on many occasions,
27:34
and done this yourself,
27:37
yeah i don't know how i did that but anyway you did you did it repeatedly for
27:42
a long time before we started getting into the man altering and once.
27:48
And I do like the fact we're doing an altering because it is radio-alty and
27:51
I think the vox pops are so much better the people are well-informed very educated
27:56
and clued up in altering they're really,
28:00
what's the word they are well-rounded people they know a lot about different topics,
28:04
but i would definitely use the because we went to liverpool for my pre-birthday
28:07
celebration on saturday and jamie was one of my friends that went and uh as
28:10
soon as we got to liverpool he goes he needs red bull my friend was like red bull will give you wings,
28:15
so i think that doing beautiful the street yes gives me wings there you go it
28:19
gives you wings and we'll come back and jamie i'm going to talk about the same
28:21
thing uh to to you so we're continuing our look at special educational on needs and disabilities and
28:28
society's reaction to that through the personal experiences of James,
28:32
Jamie, and myself, actually.
28:34
We'll come back, we'll pick up with Jamie, and then we'll round off the conversation.
28:39
This is The Late Late Lunch Show with Rod Maxwell.
28:43
You're listening to Radio Alty. It's The Late Late Lunch Show,
28:45
and the lunch discussion today is all around,
28:49
I guess, the continuation of living with disability and through the practical
28:54
experiences and the very honest experiences shared by James Spencer,
28:59
journalist on View from the Street and his friend, Jamie.
29:03
Jamie, in the same way that James was talking there.
29:12
Have you learned to identify when things are getting a bit intense for you and
29:18
you might be getting a little bit overawed and how you deal with that, Jeremy?
29:25
I suppose you could say some cases, but I don't get overwhelmed often, actually.
29:33
There have been times I get stressed, but not overwhelmed necessarily anyways.
29:38
But there have been times I get stressed and things, but if I wouldn't understand
29:44
something about it, or if there's a certain time constraint,
29:48
or if I have to do something at a certain time.
29:53
Okay, for example, I talked about this with James, but there's a thing where
30:00
I'm trying to sort out my passport because my passport was recently expired,
30:05
so then I've just been trying to figure out like how can i go about doing this
30:09
how can i trying to update my passport how can i and actually only recently because i didn't.
30:17
Talk to the the people at the office talk called them and them not understanding
30:23
what i'm trying to talk about and it's just like that in itself that's stressing
30:26
you know and i don't know i just it did,
30:30
give me like a breakdown of like or mental breakdown because then again,
30:35
trying to get trying to get out of like saying okay i want to renew my passport
30:40
i want to have a change so it's the new one and then them not answering my questions just like,
30:47
where are we getting out to like this is not helping me at all anything is not
30:51
helping me i was like you know what i'm at the call right there thanks for everything,
30:57
bye And then I have some of my family members just helping me because at least
31:03
they know what it's like having to do that instead of,
31:07
having to call experts and say, this is how you should do it.
31:11
It's like, you're not helping me and I'm not getting the information I need.
31:15
But yeah, that's kind of one example. Well, do you know, I've been trying to
31:20
apply for my Irish passport and,
31:25
I looked at the documentation and the process and.
31:32
I stopped. It was too complicated. Yeah.
31:37
I couldn't find it in me to push myself to complete it.
31:43
And I don't know whether that's me being lazy or making excuses,
31:49
or actually the process was too difficult or my new brain, as I call it post
31:55
brain injury just works differently, but I still haven't done it.
32:00
And, and I wasted the money that you spent to apply for it.
32:06
And I'll never get that back, you know, but I don't know whether I should expect
32:12
them to make the process simpler just for somebody like me,
32:17
or what it means is that I just need help. And.
32:23
I think asking for help sometimes I find difficult.
32:27
And then sometimes I think some people think, well, we help you too much and you're lazy.
32:34
But do you get the same sort of conflicts, Jamie or James?
32:38
Do you often find yourself stuck in this vortex between, yes,
32:42
I need help, but am I actually becoming a bit lazy about this?
32:46
I don't know. Yeah, so for me,
32:48
especially sometimes, it would get to that certain thing where it's like.
32:54
If I'm like stuck at something and I keep telling myself like I have this like
32:59
weird cycle I keep saying to myself oh I'll get around to it I know I'll get
33:04
to it eventually and I'll do it I'll complete it,
33:07
but like I think sometimes I would just have to ask like other people like could
33:12
just help me with this thing,
33:14
but it is quite hard to ask the people for help because then I think sometimes
33:20
for me it feels like something like weakness it was like If I can do it,
33:24
certainly someone else can do it.
33:26
But then the way, so I think logically the way help is meant to be is that I
33:34
can only do something so far until they would have to see me.
33:39
You know, I'd show them how I do it and then they see the problem and then they'd
33:43
help me out doing it rather than saying, okay, I need help do this for me.
33:49
Yeah, I understand perfectly. And we're coming to the end.
33:54
I'll take a break and then I want to wrap up. And I want to wrap up by asking,
33:58
what else do you think would help people who have these sort of hidden disabilities?
34:05
You know, how much more awareness does society need to appreciate it?
34:13
And also possibly what could employers do to get the most out of people who
34:19
have got this called the super strengths?
34:22
This is the Late Late Lunch Show.
34:24
It's the Late Late Lunch Show. And on the lunch discussion today,
34:28
we're continuing to look at living with disability and probably specifically
34:33
looking at those, those, that,
34:35
group of hidden disabilities that aren't so obvious, but actually can be just
34:41
as debilitating as physical disability in, in, in many ways.
34:45
I'm delighted to have Jamie and James Spencer from Fuse of the Street with me
34:50
today on this discussion.
34:53
Let's talk about what else would help, because we have recognized that society
34:58
has made huge strides in its understanding.
35:02
And in some ways, because the definition of disability has opened up,
35:07
and I think actually mental disability, depression, et cetera,
35:12
we're starting to get more understanding of that.
35:15
Things are opening up, maybe not as fast as some would like,
35:19
but there is more awareness maybe a bit more compassion,
35:24
what else do you think james would help well,
35:28
i think there's a lot of lack of understanding a lot of negligence and ignorance attached to disability,
35:33
because they don't know these things so people who are neurotypical they don't
35:37
realize that people have anxiety or things can triple their anxiety,
35:41
so for example on whatsapp whatsapp is very fast moving like one minute you
35:45
send a message and someone could just send a message literally instantaneously,
35:48
for me that escalates my anxiety because it's all happening too fast for me.
35:52
I can't process it and absorb it all.
35:55
It's all very anxiety inducing so when I'm sending my messages back that's the
35:58
anxiety or I'm anxious about the waves that they're coming in especially if
36:02
people are expecting something from me.
36:04
So in that sense I don't think technology doesn't help in that sense but I just
36:10
think a lot of people don't realise these things and then I think for example
36:14
I've had issues with the fact that I've got this toothache in my mouth because.
36:18
I don't know, maybe I've got a new cavity or maybe there's something wrong with
36:21
the composite filling that we got done six months ago. But either way,
36:23
ringing the doctor's surgery doesn't help. I don't like this ringing in a queue.
36:28
I don't like the music and the instability of it.
36:31
And I don't like doing that for the dentist either. So I personally think that
36:34
organizations need more understanding of autism and disabilities,
36:38
how they affect different patients and customers rather than thinking everyone's
36:41
the same and have a handbook for that. They need more training.
36:46
And Everyone has different communication needs. So I think it's better to just
36:50
be able to email, a very short email and say, email in such an organization.
36:55
Just say, look, I need a devil appointment. These are days and times I can do.
36:58
Can you just email me which one you can do? And then everybody will say,
37:01
hi, it's Bob. We can do it. But not be saying that.
37:05
Can I play devil's advocate with you a little bit on that? Because to use your
37:09
term, neurotypical people would turn around and say, do you know what?
37:14
I, I, I hate those call center queues. I hate waiting on the telephone just
37:20
to be put through to the wrong person.
37:22
It's not specific to somebody who might have autism or, or, or, or whatever.
37:29
I guess the difference is that as anxiety-inducing as it might be for just anyone,
37:37
it's worse for somebody who's not neurotypical.
37:40
That's what I'm saying, because if you want to call the council for your council
37:43
taxable submission, you're 25 in the queue, and you're waiting half an hour,
37:46
40 minutes. By the time you've actually got on the phone, by the time you've
37:49
actually said what's wrong, you've wasted an hour and a half.
37:52
You've completely beaten out, battered out, and exhausted.
37:55
And I just think that this is ridiculous. where in 2026, like Manchester City
38:00
Council has it for children at their schools at schools, but then they don't
38:04
have any suitability for their systems.
38:07
And then when they're saying things in these massive long loaded letters that
38:10
they send to the post, I can't read it or understand it because of my dyslexia.
38:14
So it's all just a massive blur. So I don't understand why they don't just put
38:17
the brakes on here and just say, someone's autistic, they've got a disability
38:20
or dyspraxic or whatever it could be.
38:23
We can help you. What can we do to help you? or maybe have a
38:27
autism support system team or an awesome support desk and they don't want to
38:31
put the funding into that but i think every organization needs this and if you
38:34
speak to other autism experts for interviews
38:36
they will tell you all the people with autism they will all tell you that it's
38:40
difficult for autistic people to access services really difficult
38:43
but they don't want to spend the time with the money,
38:46
so let's take that example would you say to somebody who has no understanding
38:50
of autism, for example, or is a neurotypical, to use your term again, somebody who.
38:57
Has no disability, that as much as they might get frustrated,
39:03
and anxious when they're waiting on a call and being put around different people, that,
39:10
what they're feeling is multiplied X number of times by somebody who has got
39:16
autism or some other disability.
39:20
I think what's annoying though is the world tells you you have to behave this
39:23
way because I have my own family who are neurotypical and they're like,
39:26
oh, just get on with it or just, you know, that sort of thing,
39:29
just, you know, like it or lump it.
39:31
It's like, no, no, I don't have to do anything. Like I have a disability or
39:35
all three of us do. We don't need to do anything. The world is living backwards.
39:39
The world should actually be trying to bend towards people,
39:43
who are neurodivergent and help them, not force people the neurodivergent to
39:48
be neurotypical because these are lifelong disabilities like your short-term
39:52
memory loss might be lifelong, my autism is lifelong.
39:58
Jamie's might be lifelong so we can't just,
40:02
we might be able to improve things but it's not, people shouldn't make us feel
40:05
down or sad or depressed or make us feel useless and worthless by saying we
40:10
have to do something to make us feel bad about it, they should accommodate for
40:14
us And Jamie, just your final thoughts on this.
40:17
How much more do you think that society needs to move to, to make life better
40:24
for people who are not neurotypical?
40:28
I mean, I do get what James is saying, and I think there should be more ways of, like,
40:35
even the funding stuff, like, there should be more ways where people should,
40:39
understand there should be, like, funding in place, there should be, like,
40:42
businesses and things to have, like, understanding of how they're different people,
40:47
how they work and how they function, because it's not every time when someone,
40:53
like, say, for example, if I went to work one day and it's like,
40:58
I don't understand how X thing works.
41:01
But that's the expectation.
41:03
I feel like there should be something that says, okay, this person knows how
41:08
a thing works, but then it's like, they might need a bit of time, something like that.
41:12
But yeah, there should be something in place and I get what James was saying.
41:17
I think there should be more funding in place, there should be more X things,
41:22
for people, for coming to date, new television people, because,
41:26
the way the world works is just really quite difficult to get through life and just like,
41:33
have it easy for most other people who don't find things as easy as anyone else does.
41:40
Basically for me for example I communicate better face to face and when they
41:43
do the reasonable adjustment to meet me on video call everything is exponentially
41:46
better to communicate that way.
41:48
Okay well guys thank you very much for your time I really enjoyed the discussion.
41:52
Eye-opening for me as well and we'll maybe pick up again on this in another episode.
42:00
Jamie and James, thanks very much indeed. Thank you, Rod.
42:04
This is the Late Late Lunch Show with Rod Maxwell.