#9 What does Hidden Disability mean to you - with Fil Krupa

All4Inclusion asked a number of people what the term Hidden Disability means to them.

Whilst it was a potentially sensitive subject to discuss, Fil and I tried not to walk on egg shells as we spoke. We both fully understand our opinions are not necessarily correct and are open to be educated on the subject.

Feel free to reach out to us both on Scott 🧡💙 Whitney | LinkedIn and Fil Krupa | LinkedIn

A hidden disability can mean different things to different people. Fil's son who is diagnosed autistic gives Fil plenty to think about as he is constantly learning as his son grows.

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

Transcript

Scott Whitney: 0:47

Hi, welcome to the next edition of the call for inclusion report. Today I'm joined by a good friend of mine, Mr. Phil Krupa to talk about hidden disabilities. I feel how are you today?

Fil Krupa: 1:01

I am really, really good. I've been really looking forward to this. So I'm really happy to crack on.

Scott Whitney: 1:07

Excellent. Excellent. Do you mind just telling listeners a little bit about yourself? I'll just give a little bit of background.

Fil Krupa: 1:12

Yeah, course I can. So my name is Phil Krupa. I'm Polish as the funny spelling and my first time so I came to the UK at 19 on the bus, 200 pounds in my back pocket, nowhere to stabilise. in Liverpool, as you can probably tell from my accent. So I've been here from, what, 17 years now. So the UK has given me a tremendous amount of opportunities that I took. My I got myself through uni should be an accountant. Now I'm a wealth manager. I'm just about to start a new job with HSBC on the island of Jersey. All exciting moving next week. And yeah, I think one of the reasons why I'm here is the fact that I have a five year old son Oliver, who's autistic, and I suppose classed as a hidden disability, right?

Scott Whitney: 2:03

Yeah, definitely. Yeah. Yeah.

Fil Krupa: 2:04

It depends how autistic you are, in which way. But yeah, definitely can show. So that's that's the that's the short of it about myself. Yeah. But back to you.

Scott Whitney: 2:16

Yeah, excellent. So what we've got we've or I've asked, a number of people for would be either a definition of hidden disability, or what's the first thing that sort of comes into their mind when it's hidden disability. So we've got a Word document, which we've both got in front of us. And what we're going to do is we're going to pick three from the Word document, each taking interns. So as prepared as I always am, I haven't got a coin, but I do have a little chop.

Fil Krupa: 2:51

Okay, so

Scott Whitney: 2:55

which hand is the bottle topping? Oh,

Fil Krupa: 3:00

I'd say it's in your left hand.

Scott Whitney: 3:03

Which is this one? Yeah. Yes. You are correct. So many celebration there. You get to you get the opportunity to go first, Phil, so you choose the one that sticks out in your mind for first.

Fil Krupa: 3:21

Okay, let's go. Let's go for David Lee's. It's nice and long. So mostly the sudden we can sink our teeth. And so David Lee said to me, hidden disability is a bit like a red rag to a bull. I have a sunflower lanyard to let people know that I have a hidden disability because I don't look autistic. So I've been told another red rag to a bull. But that gets me in the amount of sorry, but But what gets me is the amount of people who have used the concept of getting away with breaking the rules, because they can send beware alarm yard, which says that exempt without actually meeting it. Whoo. Okay. This is of course, can never be proved. Yeah, you can't go around and force people to demonstrate the hidden disability. But it means for me directly. But it means for me directly, I still have to wear a mask in shops and onto public transport, because they simply don't trust those that were one to avoid the laws and rules. Okay.

Scott Whitney: 4:35

So what made you what made you choose that other than it was it was fairly long?

Fil Krupa: 4:40

Well, this chap mentions autism. And that's an interesting so he wears something that basically flags it up several mounts that he's that he's onto autistic. I'm not sure if I understand this correctly.

Scott Whitney: 4:59

So do you know what the sunflower lanyard is?

Fil Krupa: 5:01

I don't actually yeah, I think that's why I'm confused.

Scott Whitney: 5:03

Yeah. So so the sunflower lanyard is basically something that people can wear. I'm just saying this, if there's one here, there's, there's not so it must be kind of a way. But basically the sunflower lanyard is like a symbol to say that I have a hidden disability. Give me a little bit of space, give me a little bit of time. You know, and I'll just hold this up, which is like a sunflower badge which says can I help you which is kind of saying to people who have it the badge says to people who have disability. You know, I'm I'm aware of your situation and I will try to support you So, if people go to an airport and there were some flower lanyard or something they might get they get some additional assistance and different things like that.

Fil Krupa: 5:54

Okay, um, weather. Okay. I think this is an interesting one, because he mentioned that people say he doesn't look autistic. And that's an interesting one, because my lad doesn't look autistic either. I don't know what an autistic look is. I think it's because because my lad is, you know, is kind of a normal, normal abnormal looking lads. Is it more body language? Do you think? Because I know motor control? Isn't that different for autistic people? Some of them anyway?

Scott Whitney: 6:31

Oh, yeah. I think the, um, this is where that red rag to the ball comes in. Because I don't think autistic autism has a look. So as you by physically looking at someone, you wouldn't be able to tell them as autistic. If someone was in a loud area, and they were struggling with the noise, and they've moved themselves to a quiet area, you might you might sense that that could be an autistic trait, because they're, they're struggling with with the noise in the crowd. But that's not a look. That's kind of Yes, you

Fil Krupa: 7:13

said behavioural tip

Scott Whitney: 7:15

behavioural Yeah.

Fil Krupa: 7:18

Okay, and he mentioned this about some people using this, using these sunflower Yamla lanyards to basically get more without deserving it, which you're, which will always get, I suppose, in any system of help that you're ever set up,

Scott Whitney: 7:37

especially when a sunflower land yard costs under a fiver. So like, you can order Amazon, you can order them from a lot of charities will do them. So you know, like the brain charity, as you know, is quite close to me. They they do a lanyard. So it is easy for someone to be able to pick up, I guess. During sort of COVID, people were more told, right. If you're not wearing a mask, one of the things you should be doing is wearing a lanyard. And that is really a thing where people kind of got into this, because I just don't think it was, you know, sunflower lanyard was well known pre COVID. In actual fact, going back to what I can think of I don't think, did I know it before? COVID Did I not? Couldn't tell you I couldn't tell you. But if I didn't know it before, COVID I didn't know it long before COVID I know I did a mental health first aid course not long before COVID. And I'm talking well COVID was around but it wasn't kind of around if that makes sense. At the time I did it. So that would have been the you're definitely wouldn't have known about it before then. So. So yeah. Yeah. And I think he has gotten to linked it to wearing the mask and things like that as well. And, and he's potentially not 100% comfortable. So wearing a mask, maybe because a century. And he's then forcing himself to wear a mask to keep himself safe. So

Fil Krupa: 9:37

yeah. So that's, I think this is a really good example of how systems are put in place like he's sort of our own yards. Yeah. Which are meant to help things right. Yeah. Quickly can become really complicated. And, you know, he you mentioned that he still wears a mask, because he doesn't trust other people to wear or not wear them. And yeah, it's just problems with every system. Oh, by the way, speak of the devil. There's my Oliver. He has a thing about McDonald's lately, don't ya? Okay, I'm busy now. When you go Oh, okay. Oh, he brought me post.

Scott Whitney: 10:28

Excellent.

Fil Krupa: 10:34

Okay, can you leave us alone please?

Scott Whitney: 10:38

You guys have have little jobs, don't they? So my youngest, her job is to turn the washing machine off when that bleeps. So, wherever she is in the house, she just goes full tilt, turn that washing. It's brilliant. Yeah, sort of, sort of coming back to that one then. I think one of the things that with that is also like disabled parking bays. Yeah. Because people parking disabled parking bays when they haven't got a blue badge. So it's again, it's that kind of, can I get away with it? Yes, I can on repeater system in that similar sort of way. So right. So let's have a look here myself down the list. And what we've actually got in this list is we've got a lot where they're very, very personal. Where people have children or have a condition themselves. Okay. Right, so I'm going to, I'm going to choose Sandy Roberts, which is the one below there. Yes. Not because it's below David Lee on the list. But because I just think it's a it's a really good one. So hidden only to society with blinkered views, but very much unhidden. So the person experiencing the difficulty, not just difficulty disability. So I think here, you know, people with if we go back to autism, people wear masks to be able to, you know, they don't pick up social cues and different things like that, so that they're forever going away, around wearing a mask. So at least 80% of the time, they're wearing a mask, what that could be 80% of the time when they're in a sense of feeling awkward. And I think everyone has experienced a feeling of awkwardness. And I don't know if it is right, or not kind of a good analogy or not. But you know, let's say you go to a party, don't feel you should be there. You're on edge, you're feeling awkward. You have one drink, and you go and that hour that you was there, you was feeling kind of awkward? Well, I can kind of imagine if someone's wearing a mask, they've got that sense of feeling may be magnified. So a lot, a lot more. But for 80% of their life, or 80% of their waking life. I don't know if that's right, or wrong.

Fil Krupa: 13:43

I actually really liked that analogy. I think just thinking about that now, because I'm quite introverted as well. I know, it doesn't. Don't always come across as one. But. So that analogy of feeling awkward at a party. Yes. Yes. I've experienced that many, many times. So imagining people with hidden disabilities, that's how they feel. Yeah. Right. which then makes them shy away from those experiences, right? Because if I'm awkward at a party, I'm probably going to leave, you know, pretty quickly. Yeah. So you just don't want to be in those situations. Yeah.

Scott Whitney: 14:22

But that situation for, for someone, let's say with a hidden disability could be just going to the shop.

Fil Krupa: 14:33

Right? Yes, absolutely.

Scott Whitney: 14:34

Because the interaction with the shopkeeper, the shops, really brightly lit, people are going into their, into their space. But I guess we're also kind of focusing on it at the minute from an autism perspective, because of David's one, but could be looking at people who have had a stroke. Who wouldn't necessarily have that, that awkwardness, but someone may have a conversation with them and and they're relearning their speech. And I guess there could be at the front of a queue. Six or seven people behind them, but they're having to speak slower to get things out and that could then cause an awkwardness. And the people behind obviously may not know that.

Fil Krupa: 15:28

Okay, so I can I can sense two sorts of two way sources of tension in that situation. There's the person who's at the front of the queue being conscious of the fact that the holding up and you get that sometimes when you're fumbling with your money or whatever, with your credit When you're paying at a checkout, and you feel like you have to do it as quick as possible, at least that's what I'm like, I have this voice that tells me you can't force me to do a quick thing because other people are waiting. And I think that's really, really ironic, because when I'm in the back of the queue, I am really tolerant of people taking their time. Yeah. And that's something that I've learned, I think it's, we all like things to run as smoothly as possible. And when they don't, this this, this kind of, of a sense of Come on, hurry up, you know, we all get that. But you kind of have to consciously overwrite it, and just go, you know, why are we rushing our lives away? You know, it's just calm down.

Scott Whitney: 16:32

Yeah. And you got a bit of timekeeping that comes into it as well, avenues. So if you've left yourself five minutes to do a job, that should take 10, well, invariably, you're going to be in a situation where, regardless, you're going to be rushing. But if you give yourselves 15 minutes to do a job that takes five, the best outcome is that you're, you're gonna gain yourself 10 minutes to do at the end. But it also then allows you to, I shouldn't allow you to be more respectful, because you should just be more respectful. But I'm just kind of just thinking that if people had that as a practice, and a habit, then then it would support people with hidden disabilities that aren't put on don't feel like they're under pressure.

Fil Krupa: 17:29

Yeah, I'm worthy. I'm worthy, I suppose. So. I think that goes a little bit. That's a good point, I think it goes a little bit further than just about disabilities. Because when you go out there into the world, and you're rubbing shoulders against the people that you don't know, they're all different. And we all kind of have a bias of we all think other people are like us, they think like us, and they behave like us. But they really don't, because we know, and you got to, you got to almost remind yourself that other people don't do things as quickly as I do, or slowly as it or whatever it may be. And you have to kind of presume everyone's almost got, it's almost as if you have to presume that you don't know anything about anyone. Yeah. And try not to presume anything about anyone, which means you then give them the space to take the time when I have a joke and a laugh at the bus driver as the paying for for the tickets, you know, instead of just rushing them because you want to get on you know. So, I don't know if I'm rambling, but it feels to me that we all have to be have to give times face everyone around around us, regardless whether we know they have disability or we suspect at all. Not quite all it's almost beside the point, if that makes sense.

Scott Whitney: 18:58

Yeah, yeah. Yeah. Cool. Right. Back to you.

Fil Krupa: 19:03

Okay, let's go for Sylvan Rosenberg. I don't like the term disability in general. While I understand that, it may be disabling for some I don't see my nd as one.

Scott Whitney: 19:24

So neuro dis. neurodiversity.

Fil Krupa: 19:29

Okay. And diversity does not stop at neuro differences. notions, hence the term should be updated in my opinion. Yes. Okay. Yeah, because so so the term I suppose disability has always been linked to the fact that you can't do something right. And I can see his point perfectly, especially if I think about my my little Oliver, because he's behind on certain things. So in school, the teachers always talk about his profile being really spiky, which means he's really good at some things, like way ahead of his peers that age. He can he can draw things and actually steal things from from memory, just randomly, quite complicated things. But that is communications lagging behind right. Yeah. So. So there's definitely that. So I like his point about not liking the term disability. What would you what would your idea of using a different phrase, what would you sort of substituted for?

Scott Whitney: 20:39

So this is the thing and is is Sylvan trying to I say just kind of your neuro neurodivergent things like your ADHD or autism should come under a different a different name or people like myself in a wheelchair. So

Fil Krupa: 21:02

that's the complicated real quick. Yeah.

Scott Whitney: 21:06

And then I guess with the, with the new word, then have that. So negative connotation in, in 1015 20 years time, so we're then having to change it again. But I really liked the point. And I really liked that thinking process because because actually, like, there's times where I feel disabled, or have a disability, and it's time to write down. So yeah, I completely I completely get where he's coming from, you know, disability in a ways kind of, like guess stopping you from doing something that that you would normally be able to do. But like you said, everyone's different. And I had this conversation on a on a working group. Last night. I said, before I was in a wheelchair, I couldn't ride a motorbike. And I still can't ride a motorbike. So I'm not, I haven't got a disability that stopping me from riding a motorbike, I just haven't got the skill set. I couldn't be an accountant before. And now I still cannot be an accountant. So it's not the disability, it's not me being in a wheelchair that stopped me from doing that. And that's the same with so many people, everyone is different. So people with autism, ADHD, etc. Yeah, I can completely get where they may feel. We're actually in a sense, where we we fit in the bracket that everyone is different. Yeah, I, you know, I guess it would be one way it would be great to, to have a, you know, have it expanded a bit. And I think it's something that could be explored, you know, I mean, but But yeah, I feel so for someone like myself, you know, the disability tag is correct. But for Silvan, it may not be

Fil Krupa: 23:22

my that I'm worthy. And I suppose there is a danger of fiddling with language sometimes brings a lot more, let's say, trying to find a new term, trying to divide people to people who have hidden disabilities, versus people who are obvious disabilities, right? And trying to complicate matters sometimes has more of a negative effect than the positive effect. That makes sense. Yeah. But, but yeah, I get your point as well. And actually, this reminds me when we first got the diagnosis for my Oliver, he was poor, that he's autistic. I didn't actually think of it as a disability. I just thought of it as a condition, I suppose. Just something you you just different. And it was my masters who actually, who actually told me that in a roundabout way, because you're not here in the UK get disability living allowance, if you qualify for it. And she said to me, that he'll qualify for it. And that really confused. Hold on. That's for disabled people. Yeah. It didn't. It didn't. It didn't add up I had, but I looked it up. And I was like, Oh, yeah.

Scott Whitney: 24:45

So then, are we then saying people with conditions are people with a disability just to fit the Disability Living Allowance kind of package when that? Yeah, they very rightly fit into it. But actually, you know,

Fil Krupa: 25:05

it's so they deserve the extra support. But the label doesn't fit perfectly. Yeah. So. So yeah. So So yeah, again, it's language, we gotta be careful about settling with language. Just over complicates so many, so many other things. And the thing

Scott Whitney: 25:21

is, is well, whatever language we use it, it won't please everyone. And I think yeah, I just think, you know, some people I personally and I think Sylvans probably very similar nature. Wouldn't take offence to anything. It's just a preference. So again, you know, look at it There is someone, a disabled person or a person with a disability. People will look at that. And some people will say actually, no, I strongly feel that I want my disability to be the leading word. And some people say, No, I want my person to be a leading word. So it's, it can be down to just preference sometimes. But I think when it comes to neurodiversity, I would quite often lead with neurodiversity, as opposed to disability. It just means that your brain operates differently. Yes, one way or another. But that's not saying it's hidden disability, because like a stroke is someone in my opinion, who's got a disability. So it can go kind of, it can kind of go both. Both ways, which, which is where things just get so so complicated, isn't it? Yeah, absolutely. Right. So okay, I'm gonna use our new Sandra Bentley's one right at the top now. Because I really like this, because it's so honest. To me, when I first heard this phrase, it was about people hiding their disability, physical or otherwise. Now, obviously, I now know it's about a disability that's not visible. And the reason why I like it is because it shows that learning process and how people do need to become educated. Because when the last time I did this exercise on the very first podcast, when we spoke about the word inclusion, I had so many answers come back from people straightaway. But I think we've hidden disability, I didn't get as many, even after I repeated the process of asking, again and again. And I think it's because people worse, we're scared of getting it wrong, getting a wrong answer, and maybe causing offence. So what I like about Sandra's is, it shows that at some point she was she was wrong. She didn't have the correct answer. And she's not afraid to admit that and it shows that she's learned. And that learning process is there. And I just feel it's it was really kind of brave, brave thing to put up. And you know, knowing Sandra, she's, she's a lovely kind of amazing person. So, you know, I think sometimes it takes someone like that to be able to smash a glass ceiling or whatever, and put something out there.

Fil Krupa: 28:44

I agree. I think, and I think this is a good point about how most of us, people without obvious disabilities are without diagnosis of a disability. All of this can go really over our heads. If I didn't have an autistic son, I know very little about autism. And I suppose about hidden disabilities altogether. And so I think, again, it goes back to that first point I made that you can have, you kind of have to teach yourself to give everyone the time and space. Because you said you simply don't know. Even if it's a person without obvious disabilities, they might have just had a horrible life event. Yeah, that's thrown them off, and then just need more time because they're just, they're just overloaded. You just never know you should, you should just never presume it. Which is quite difficult because we, we've we've evolved to judge because the amount of people that we rub shoulders with every day, you can't physically analyse them. You can't sit down with every single one and have a conversation and ask them personal questions about what they're like. No, no. So we have to have a filter, you know, that that lets us deal with other people on the quick on the fly. Which obviously, sometimes can can definitely malfunction.

Scott Whitney: 30:11

Yeah, and mental health can come fall under hidden disability right because people with depression or anxiety or bipolar or, you know, the whole kind of spectrum of mental health, that's something that's impacting them impacting how they are when they're stood in front of you. And actually, you know, you need to give them that respect.

Fil Krupa: 30:44

Yeah, I think That's, I think that's most often seen. I don't know about your negative words, but in Liverpool is people that get angry with petty things in the in public. And you could definitely tell straight away it's like not not all as well. And that would know, well, you know, and again, keeping your your own ego in check and giving them the space to just go through whatever they need to go to. Humble. Yeah, absolutely. Yeah, fascinating. Fascinating stuff this

Scott Whitney: 31:21

All right, so back with you. Okay.

Fil Krupa: 31:25

Let's have a look. Okay, so we've got Chloe, Evan, you and Chloe Ewen. From a personal perspective, my son has a hearing impairments, which he doesn't wear a hearing. But he doesn't wear hearing aid. I have to constantly remind people of this, as they just forget, when they don't have a visual reminder. Maybe we should all make a bit more effort to listen to people remind what they need. Right? Okay, that's an interesting one. And it's just made me think. So her son has a hearing impairment, but he does wear a hearing aid. And that can I can imagine sometimes can be a bit frustrating for everyone involved because people talk to him and they presume he can hear right. But he's still none the wiser. So there's definitely a bit of a pitfall there that you need to manoeuvre about. But this actually reminded me of is, again, going back to my Oliver, sometimes when I take him to a playground, he's he's nonverbal, mostly nonverbal? Yeah, he's getting that slowly but surely. But he can be quite a bit of a bit of a rough and tumble, kind of style of play. Being rambunctious, not only a boy, but a Krupa. So, very often, I used to find myself explaining to other parents at the playground, you know, I'm sorry, he's autistic. I don't do that anymore. I stopped doing that, because I realised that a that presumes they know about autism. And B, I realised that whatever all the kids have to have to learn is, is how to deal with a kid whose difference not make sense, you know, me slapping a label on it. Yeah. So it's actually been quite quite interesting, because I've had him play with other kids. And sometimes it gets a bit rough. And I will pay attention to how the kids react. And at the very beginning, it's always a bit puzzled, because they haven't encountered this yet. And then they get a little bit more cautious around, right. And that's it, you could see the kids learn about this one individual just by song and how to find out where the line was drawn, if that makes sense. Now, I'll still tell my Oliver, if he goes off, you know, over the line somewhere, I'll tell him, I'm sure I'll direct them or do whatever I need to do. But I'll leave the environment, I'll leave the parents, and I'll leave the kids to kind of figure it out the rules of engagement on that URL. So that makes sense. Yeah. Because that's all you can do anyway. Because, again, me slapping a label on it doesn't really help things. I don't think, No, that makes sense.

Scott Whitney: 34:33

And then the, the, the other child may pick up on the language that you've used, and then face this situation again, but maybe in 12 months time, and then use that label back. Is it because this child is autistic? Is it because this child has autism? And whichever turn a phrase you've used? But they may or may not. And also, then they start off with a negative connotation of what autism is, instead of the positives, like, you know, Oliver's amazing ability to draw and things like that.

Fil Krupa: 35:19

So that's a very good point, I think. I think, yes, there's definitely a danger that once you put a label on that people will go it's almost as if this is how I feel correct me if I'm wrong, but if you put a label on someone, it makes your it makes your willingness to explore this current this person's behaviour a little bit less because they already have a word for it. Does that make sense? Yeah, yeah. If you don't label anything, you just go ego. There's Oliver, figure him out. I think people will and kids will, will try to engage a bit more. Yeah. And I'd actually, I'd actually prefer all the kids to go. Oliver's a bit weird. Yeah. And to go, all of it is autistic, or whatever it is. Does that make sense? Yeah, I think I think if someone's a bit weird, and I'm a bit weird in many ways, and I like that, because it makes people more curious about if that makes sense.

Scott Whitney: 36:17

Yeah. And I guess like, if you kind of ask most people with a disability, what they want to do is they want to be treated exactly the same. So everyone is different. But they want to be truly saying. So they don't want to be at the front of the line. They don't want to be at the back of the line, which is sometimes where were we are, we just want to be where we should be in that line. We don't want preferential treatment, we just want to be have the same as everyone else, or the same opportunity. So there will be other children who are rough and tumble as well. And been able to kind of, because it's not just for the for the child who all of us being rough and tumble, we have to figure it out. It's also for Oliver to figure it out. And I guess you know, what, what you what potentially you could have been doing was denying him that opportunity to figure it out. When now you're actually going, yeah. Figure it out. This is you know, you're gonna have to adapt. Yes. Throughout life. Let's, let's start now.

Fil Krupa: 37:32

Yes, absolutely. Yeah, that's a very, very good point. First time in first time, his life, he's actually made friends with a with another chap, when another little lad, and their favourite way of playing is knocking each other off the seesaw. Okay, so that when one goes up, the other one jumps off. So the other ones, and they're just both just dying, laughing. It's just, it's amazing. It's amazing to watch. And again, does he have to make interaction with 15 different kids to find that one? That is on the same sorts of wavelengths? Yeah, I think that's, I think that's what it is to let them figure it out. Absolutely. Yeah.

Scott Whitney: 38:16

And the last corner point going on Chloe, saying, Hey, I had a good friend in school, who was very severely deaf, really, really hard of hearing. Now, he wore two hearing aids, but because he was embarrassed about wearing hearing aids, he had his hair long. So you still couldn't see the hearing aids, but he was physically wearing them. So completely get where Chloe's coming from and actually, you know, with with my friend, Tom, you would just need to be looking at him, giving him eye contact, wouldn't have amazing lip reading, wouldn't have to speak any slower. Wouldn't have to speak any slower, but you just need to just be looking at him. That was really all you needed to do. And his his language back. His speech was brilliant. His speech was absolutely brilliant.

Fil Krupa: 39:15

Maybe actually, this is a this is a good point of Chloe's listening, because now, she didn't tell us why he doesn't wear his hearing aid and so on. But maybe that's one of the reasons maybe he doesn't like other people to see that he has a disability. Yeah, if that's if that's the reason maybe growing his hair long is as an option, right. Maybe he'll win that.

Scott Whitney: 39:39

Yeah, exactly. But I mean, I guess it's doubt is choice, isn't it? It's down yes. And him if he wants to, wants to wear one and it's down to us to be able to give them the respect and, and make sure we're looking at him or speaking to him. So, right, so the last one I'm gonna go with is, is from Claire goff. She put, I think of my son who has ASD social communication. Although he is a handsome young man, he's hiding so much anxiety around daily tasks. It's been a tough journey. Lots of tears, lots of frustrations and for me as his mother, his provider, and his voice. I will advocate his and others with hidden disabilities are just now this one. You know, this is one well, you know, when I'm doing this podcast I never admit to be an expert. Because I'm far from it far, far from it. But what I want to do is kind of start the conversation. I don't want to provide answers. Because I haven't got those answers, but I want to start providing the conversation. And other people then can, can hopefully pick it up and sort of take it on. But I just, I just think it's such a powerful ending. And, and any actually, I've got goosebumps kind of rereading it kind of hair standing on end. But I just think there's so much pride in there. There's so much pride, you know, it could almost be you know, you can imagine it being at a speech and you know, right at the end, everyone just just cheering and clapping, you know, getting behind Claire and getting behind us on. You know, it's been a tough journey. There's been lots of tears, there's been lots of frustrations, and for me as its mother, his provider, and his voice, I will advocate his and others with hidden disability. I just think it's so powerful.

Fil Krupa: 41:59

I love it. I love this. It's made me think about a couple of things actually. The journey, the journey of challenge and tough. It's been a tough journey. I have in the last couple of years because I've had some tough journeys in my arm throughout my life, not just the last two years, even though the last two years has been a particularly difficult. I know that a tough journey. Make sure on the legal people better and stronger human being at the end of it. Yeah. And and when he mentioned that he's a handsome young man who was hated so much anxiety. She mentioned around the tasks. But I've I've hidden quite a lot of anxiety with myself, like in the past. For some reason, the way I was brought up whatever it may be, just opening up about my anxiety was never an option in my mind, my mind never did. And even when I first moved to the UK the idea of taking my CV and giving it out to restaurants, pubs, whatever, used to fill me up with so much anxiety, I wouldn't do it half the time, even though I was sort of pressure of doing it, if that makes sense. Yeah. But now that I'm kind of halfway through my journey, I know how powerful that challenge has made me. Yeah, and how much I've learned from it. And how much more mentally resilient I am now thanks to it. Is why I love it. Lots of tears, lots of frustration. Yeah, absolutely. And for her as, as her mother has provided his voice, our advocate his and others with disability. Absolutely love that.

Scott Whitney: 44:02

And I guess like, obviously, you're at the start of your journey with all of her as well. Yes. And, you know, think of the things that, that that created anxiety for you. So we're saying like, going into restaurants and handing in CVS and things like that. So there's going to be things that create anxiety for you. And, and soon, not too soon, but 10 years or so, you're going to be holding all of those hands, going through the same things that created the anxiety for you. And I know straight away, you know, without having to think too much of it. That anxiety for you is just going to go all your focus on it's going to be being strong for Oliver and Oliver, who may have that anxiety, but you will be there for him. And you will just be strong for him. And even afterwards, you might think right. glad that's over and done with but Oliver won't know that he'll, he'll just see my dad being supportive of me.

Fil Krupa: 45:24

Yeah, I think the biggest challenge is going to be letting them and seeing them fail. Yes, they have to. It's part of the journey. I think failing has got a bad rap. But you think about anyone who's successful and achieved anything And you've looked through what they've done in the past, you'll see that they've been favoured a million times, you know? Yeah. And I think that's, by the way, this is. I've heard this from McKinney colleges. He says that, and the reason why he says that is that a mother's job is to protect the child. But at some point, a mother needs to switch gears. And some of that protective instinct needs to give way to the child exploring the world and failing and stumbling as they do. And I think the most famous example of this as is, as Jesus's mom, Mary, yeah. It's powerful stuff.

Scott Whitney: 46:37

Yeah. Really, really powerful. So let's go on to what? hidden disability, you know what, what it means to to us. So once you're thinking, Oh, I'll start. But, um, I'm actually going to start by asking you a question. If I got a hidden disability

Fil Krupa: 47:02

Do you have a hidden disability? Yes. Yes. Because I know you're a little bit. Yeah. And the wheelchair is not the only thing that you that you on the day have challenges with, right? Because your health is up and down? Yeah. So I'd say so I'd say so. Absolutely.

Scott Whitney: 47:20

Yeah. Yeah. And people might just see the fact that I'm in a wheelchair, my, my just go out, he's just got a physical disabilities or, or non hidden disabilities. But actually, if I'm out and about people would, people would say, yeah, yeah, we'll give him space because he's in a, in a wheelchair. So actually, in that sense, I get, I would say, I'll probably get more respect than someone with a hidden disability, because people can see the physical side. But I don't deserve any more respect. And that's not saying I don't deserve the respect I get. I really appreciate that. What I'm trying to say is that people with hidden disability should have the same level of respect as me. But also, like, we're speaking, speaking now on Zoom, and I speak to clients like this, etc. But you wouldn't know that I'm in a wheelchair now. So right now, my disability technically is

Fil Krupa: 48:20

hidden. Okay. That's a good point.

Scott Whitney: 48:23

But yeah, there are kind of other mental and hidden sides to, to myself as well, but as well as the physical aspect. So yeah, so for me, I've just, I just think is, at first glance, could you tell someone has a disability, or a condition, or some sort of neuro neuro diversity? If that is the case? In my opinion, that's where I think it can come under the hidden disability bracket, whether that is the wording people choose or not. But I think that could be the wider kind of frame and under it, you would have neurodiversity kind of brain injuries may be people in a wheelchair. And also, one thing we haven't kind of mentioned, it's not the case for me, because I'm permanently in a wheelchair, but for some people, they only need to use a wheelchair some of the time. So some people on on one day, it could be hidden, they could be in pain. But it could be hidden because they're not in as much pain as sometimes. And that's why they're not in the wheelchair that on that particular day.

Fil Krupa: 49:53

Right. Yeah, absolutely. That's, that's quite a good thorough answer there. That's a good point. I'm not sure if I can add value to that. I can ask you a question actually. Which can do you think how do you think this would all pan out for you? If say you helped you still had your health issues brought you you could walk you didn't need a wheelchair at all.

Scott Whitney: 50:21

Like, potentially could be a possibility at some point in the future. So would you still class yourself as a disabled person? Ah, yeah, because I think like a big part of my my disability is like the As the spasms and the muscle twitches that I get So, so I'm I, I can't carry like a cup of tea, because I could just, I could end up burning myself, I can't carry like boiling water numerous times where I've tried to eat food on my lap, it's ended up on the floor. So there's the there is that side, there is that side of it, which, which a lot of people don't really get the opportunity to see. And also, when I go sleep, it can feel like I'm being constantly tasered.

Fil Krupa: 51:32

And I'm nice and relaxing bedside, we've seen that Yeah. So

Scott Whitney: 51:35

I can be twitching all over the place. They is. So. So yeah. I would still I would still class it, because of those things. Plus, then, you know, there are, again, some other things kind of, in my mind that that aren't quite quite like they used to be pre pre illness. So. So yeah. Cool. So I guess we've come to a decent point. To wrap it up, Phil. I mean, have you got anything else you'd like to say before we, before we close down?

Fil Krupa: 52:22

I think when it comes to issues of hidden disabilities, I think it comes down to a more general point that we need to be a lot more tolerant of each other and not make presumptions it's it's easy. It's natural. We all make them. But you know, when you're in the line, or as I sometimes watch people park and disabled spots, they have a blue badge, but they get out the car. They seem fine. You know, and I what sometimes I wonder where they got the blue bytes from but you don't know.

Scott Whitney: 52:56

Yeah, it may seem fine there. And then but they might not seem fine when they're on the way back into the car, potentially, I guess. Yeah. And I think I think leader will go back almost right back to David Lee's right at the beginning of the sunflower lanyard. And actually, there needs to be a bigger education piece around that. Because that is designed to be something

Fil Krupa: 53:24

that

Scott Whitney: 53:26

the population can recognise, to say, This person needs additional support some of the time and I think that's the key is some it's not all of the time. But chances are, most people who wear them would be able to shoot or not shoot, but will probably tell you when they need that support. It's not up to us to presume what support they need, because actually some, some support that meal you might think they need could actually be a hindrance or a trigger.

Fil Krupa: 54:07

And while there are good points and I'm a good example of the fact that we definitely need more visibility and education on this because I didn't even know about the sunflower long nails until our conversation today. So they

Scott Whitney: 54:22

and I think there's there's lots of people that is actually on my, my list of of conversations for these type of chats at some point as well. So perfect. So thank you very much for coming on. Phil. It's been absolutely a pleasure to have you on. Good luck on your on your move to Jersey. I hope all goes well. And yeah, and thank you very much sure for the people listening and once again, thank you very much, Phil.

Fil Krupa: 54:49

Lovely, thank you very much. It's been an absolute pleasure and all the best and good luck for all for inclusion. that you're that you're developing I love it. Anything I can do to help. I'm here for

Scott Whitney: 55:04

perfect Nice. Well mate, thanks very much