Diagnosis Human: What My Daughter Taught Me About Being Human with Elly Chapple

What if the biggest lessons about being human come from the people society is most determined to change?

In this Bookshelf episode, I'm joined by author Elly Chapple to talk about her book Diagnosis Human and the extraordinary lessons she learned from her daughter.

Together we talk about what happens when we stop trying to make people fit into systems that were never designed for them, and instead become curious about who they really are.

The conversation touches on authenticity, psychological safety, discomfort, communication, disability, neurodivergence and the power of slowing down enough to truly understand another person's experience.

This isn't just a conversation about parenting or disability. It's a conversation about being human.

Links For Elly

Website: https://ellychapple.com/

Instagram: https://www.instagram.com/ellychapple2023/

Link below to go straight to Insta

The Untypical Parent Podcast

The Untypical Podcaster

Transcript

SPEAKER_00 0:01

Hello and welcome back to the Untypical Parent Podcast Bookshelf. I am really pleased today to have the lovely Ellie Chapel with us today. Ellie, welcome to the podcast.

SPEAKER_01 0:12

Thank you very much. Very honoured to be here, Liz.

SPEAKER_00 0:16

I'm delighted to have you here. So Ellie is an author and she is the author of Diagnosis Human. Ellie's come on to talk to us a little bit about the book. Obviously, she's not going to give us the in-depth kind of talk around the book because then you wouldn't there'd be no need to go and read it. But what I'm going to do is get Ellie to tell us a little bit about where did the book come from, Ellie? What what inspired you to write this book, Diagnosis Human? Because I think it's a great title.

SPEAKER_01 0:43

Well, first and foremost, that title was gifted to me by a very dear friend, Barney Anglers. The guy's amazing. I've known him a very long time. And he has what I call an exceptional laser eye. So he sees so far ahead. Incredibly so. And he'll notice like the pothole ten years down the road. And he'll warn

Welcome And Meet Ellie Chapel

SPEAKER_01 1:04

you about it now. And we'll go, we don't need to worry about that. And I'm like, that's exactly what you should be thinking in terms of longevity of thinking. So I'm really am grateful that I have such a wise friend in Barney. And I loved the title of his talk so much. And when I was thinking about the title for this book, I had an entirely different title. And it was just going to be being human. And I was just like, it's just not enough. It's not enough of a oomph thing. And then I remembered this title in Barney's talk. And I was really like it never left me because he really made me think. And of course, he went into, as he does, so much um deep thinking around, you know, who are we? How do we connect? And why should that even be important? And I it really stayed with me. So I was chatting to him anyway, and he said, I want to gift it to you. Take it as a gift. You know, use it. And I was like, Really? Can I use that as the title for the book? Oh my goodness. Wow. So it's Barney who gifted that to me because he really understood what I was trying to write and how I was trying to put down the very experience of walking with, really important, with somebody in their life experience, so alongside and how you then translate what you've experienced, what you've felt, and the shifts that have occurred, which all are predominantly not

Where The Book Title Came From

SPEAKER_01 2:40

spoken at all. So how do you translate that feeling into words? And for me, this was the real test, I suppose, for me, of whether or not I'd understood what walking with my daughter had meant and how it changed me as a person, how it changed so many people who interacted with her, and how her message, just by radically being herself, like literally the most radically authentic human on the planet, she is it, alongside so many other kids that we walk past. And their authenticity is termed different, disordered, weird, strange, but it's actually what we're all chasing. So for me, this this young woman has tied herself to her own lane firmly her whole life, and I have been brave enough to step in alongside her and go, okay, I'll walk with you. I don't really know what we're doing, but let's do it. And that is really difficult for an adult. I mean, for anyone who's supposed to be parenting or teaching, or you're the person that's in the know, aren't you? You're the person that knows how to do the stuff, and then you stand alongside someone, you go, I know nothing. Literally don't know what we're doing here. Yeah. And it's very much a test of faith. Like, can I just sit and observe? Can I be fully present? Can I stop my monkey mind for two minutes and just think about what's showing up? What

Walking Alongside Your Child’s Lane

SPEAKER_01 4:10

is she doing? Why is she doing it?

SPEAKER_02 4:12

Yeah.

SPEAKER_01 4:13

And can I stay there? Can I stay there longer than five minutes and not get bored? And believe me, isn't that a test for us, Liz, in this day and age? Because we are actually actively taught to scroll quickly, to move on. Three seconds and it's gone. Three, you know, our brains are being primed to take in very shorts. We hardly ever set up information. Yeah, we don't pause. We're not being taught to pause. We're being actively encouraged to walk quickly past things. I won't get into the larger agenda of what I think is going on there, but I do think distractions are a great technique to get stuff done when people are looking over there. So Ella doesn't waver from what she's doing. So unless you walk and stay, and you have to really practice this, but she's a master in it. She's like, Yeah, I do it every day. And and we're there going, my god, I can't do this. It's really uncomfortable now. She should be moving past this point, like with the showness of the shoes. She shouldn't be obsessing over shoes. This is what the narrative was. What are you doing? You're letting her obsess over shoes, you know, like, oh my god, this is really awkward. I'm totally in the space of discomfort now. Can you stay in discomfort? Can you? Because that's a test. Do I trust as well? Just totally.

SPEAKER_00 5:29

Because I think when I think about probably external people, like you said, there's that pressure to experts might be saying to you exactly that. Let's move on from that. How do we push you away from that? How do we get her to do other things? And actually sitting with your gut as a mum, as a parent, and going, No, I'm gonna sit with this actually. I'm gonna sit with what she's doing. I'm gonna trust her.

SPEAKER_01 5:52

I'm gonna trust that she knows what she's doing because she does. My daughter, I have learnt the hard way, does nothing, nothing without reason. She's the most reasoned, rational person

Staying With Discomfort And Slowing Down

SPEAKER_01 6:05

I've ever met. She just isn't gonna do it in this linear normative way that we've been taught is the right way. It's actually not, it's a load of rubbish. We all know it is. You know, there's never been a linear normative way for any human being because we're not linear beings, we're not ones and zeros. We are massively multicoloured, cultural, all kinds of minds, bodies, brains, experiences. That's just who that's what humans are. So that's our reality. And she's just a demonstrating, like, yeah, so I'm part of this beautiful, diverse reality of human, and I do it this way. And then the system goes, Oh, we don't like that. Because if you will do it your own way, then how are we gonna manage?

SPEAKER_02 6:49

Yeah, yeah, yeah.

SPEAKER_01 6:50

And so it's this conformity and compliance thing, because that's supposed to be easier, quicker, we can get more through the door, and now we've realized actually less and less are getting through, and less and less are making it through the eye of the needle.

SPEAKER_02 7:04

Yeah.

SPEAKER_01 7:04

Because we never we were never meant to. And at some point, you know, we all catch up with this just isn't working. Doesn't work. Yeah. Yeah. Sh what she does works, and she gets to outcomes like understanding the concepts of shoe, the massive metacognitive concept of a shoe for a kid to learn, but then without vision. So how long does that take? And where's the script? And where's it written in a book? It takes or something. It isn't. But she showed me how she did it, and I had to trust that she was doing that herself.

SPEAKER_00 7:36

And I was gonna ask you already, what kind of things does your daughter have that make things that make it that she does things in a different way and and goes with her own gut. So obviously you just mentioned there she doesn't have sight.

SPEAKER_01 7:48

Yeah. She's blind, so she has a hearing loss, so she's deafblind is is her predominant uh her primary need when you fill out forms, that's what the primary need is. Yeah, yeah. Yeah. So that is um a very, very different experience of the world. And there's a real minority in this country of children and young people who are deaf-blind. And I remember speaking. She's being deafblind, Ellie. She was, yeah. So she's congenital deafblind. So there's congenital or acquired. Ella is congenitally deafblind. And this didn't come to light for me till she was seven because it was missed. The dots went joined, so to speak. So when a child has vision and hearing loss in primary senses, you need to get somebody out who knows that they're talking about about deafblindness. Because that dual loss in primary

Deafblindness And A Missed Diagnosis

SPEAKER_01 8:40

senses is phenomenally impactful. It's how we navigate our world, it's how we stand up with our balance, it's everything. So when those two primary streams of information are both impacted, it's incredibly stressful for the person. And the reason I know that is because I had the wonderful pleasure of speaking to Dr. Jan van Dijk, who was like a world-leading expert on deaf blindness. And me being me wrote to him, Hi, I'm daughter, mum of a girl in the UK, he's in the Netherlands. Anyway, he wrote back very kindly. And he just said, Let me be really clear, she's in one of the most stressful situations you could ever imagine. Because it's always going to be incredibly slow, and everybody's always going to be pushing too hard.

SPEAKER_00 9:27

Yeah.

SPEAKER_01 9:28

Regardless of how skilled they are. Yeah.

SPEAKER_00 9:30

Kind of from a primary sense. But your sight and your hearing are probably your two most important senses that keep you safe.

SPEAKER_01 9:38

Yes, they are. Yeah.

SPEAKER_00 9:40

They're your safety senses, being able to protect yourself. So I can that makes complete sense when you say difficult.

SPEAKER_01 9:48

She uses a another set of senses in lieu of those. Yes. To protect she's she's developed another sense of safety, which you and I have talked about, which is mind-blowing for me because it's utterly relevant to everybody today is talking about psychological safety, aren't they? Um how do we feel internally safe when the world's going too fast, when there's too much pressure, when professionals are being squeezed, families are being squeezed, kids are being squeezed. Like we're all under this ridiculous pressure of constantly needing to find where do we feel safe in the world? And she's developed this inner, this is one of the things I talk about in the books. It's the pulse of intention, is what I called it. I didn't know psychological safety was a thing when I was writing this book. I didn't know about Marineuron's emotional contagion. I didn't know about this stuff. I then, having written down, like I say, this how do I translate this felt experience? People are going to think I'm like talking absolute rubbish. What is it I've discovered? So I wrote it as we'd experience it using the language I'd given it. And then I went looking for where in the world is this also happening for other people. And that's when I found the literature and the academic research, the lived experience. I was like, whoa, okay, so it's a thing. Like other people are really experiencing what we've experienced. And then I dug more into the neurons, neuroscience side of it because I'm really interested,

Safety Senses And The Pulse Of Intention

SPEAKER_01 11:15

you know, how does this work on a science level? Because I know what it works, I know exactly how it works and how powerful it is on a lived experience level. But I wanted to understand, was there like a scientific basis to it? Because for me, evidence is really important, particularly when you're trying to bring people on a journey. And I'm offering the lived experience, but I want to also offer it's actually a thing somewhere if you're not sure. Because that's uh that's kind of how my brain works. So I'm like, I get that, but where's the logic bit? Because I just want to make sure it, you know, it's all sitting. So it was really interesting to see the things Ella had shown us, like how she's developed her other senses for safety, for understanding who's in the room, what they're carrying. So we would talk about the emotional temperature of a room. So she can sense that. She has it down to a T. You're doing this. What are you doing here? Get outdoor by. I don't want that. You need to go and regulate. You need to sort, you know, she can she can somehow absorb and understand them, and lots of kids do this really well. The environment as a dynamic shared space, what's coming towards her with no vision and no hearing. And I think that's phenomenal. But I think also this is something we all do, but we shelve it, and we need to trust. Yeah, we need to trust it. This is our our inner knowing of when somebody walks in the room, we all go, oof, what was that?

SPEAKER_00 12:48

I just felt that guts, that kind of feeling that you get. Yeah, that you we ignore.

SPEAKER_01 12:52

Yeah. Yeah, the energy's shifted, not going over there.

SPEAKER_02 12:57

Yes, exactly that.

SPEAKER_01 12:59

And this, I think when people aren't predominantly using verbal, which takes up so much capacity, it's so effortful to use words. When you're not doing that, you can put huge amounts of effort into other things. And that's why I think we mustn't and misunder you know, underestimate what children, young people who aren't using the expected normative ways of communicating or being in the world, but where are they directing their energy otherwise? Because they're able to do something very powerfully that we just aren't tapped into. So it's our job to be super curious about that. Like, what do I need to know? How do I learn about it? Well, the best way to learn is to sit with that young person in their experience for as long as it takes. And you know, it's like it's I was in a meeting yesterday, and I just I have to use this language. She said, I'm taking the small wins. And I was like, Yeah, absolutely. It was the very small wins, and everyone else wanted to rush ahead. This person was like, No, we've got to take the small wins. This person needs to be walking really slowly with this. I can do that, I'm fine. Everyone else wanted to run, and this person couldn't knew you couldn't run. This is not gonna work if we run. And it's being that voice in the room that says, guys, we've got to slow down. I know it's counterintuitive, I know it's not what we do. I know we don't have time, we can say that all we like, but we do actually, when you slow down, it's like time slows with you. You know, you can create space differently. So I think it's really on us, the owners, to be really curious, super curious about what a young person's showing us. Whatever language they use or don't use. Do we know it? How do we learn it? What's their culture? I'm not just talking about where they come from, talking about who they are. Like what's their deaf-blind culture, what's their autistic culture, what's their ADHD culture, what's whoever and what kind you are. Do I know enough about your culture? Do you know enough about mine? Do you know that because I'm deaf, I'm a direct communicator and you might find that rude? Do I need to tell you about that? Do you need to learn about that? As in deaf culture is really direct. We don't do fluff. So rather than jumping to assumptions, you know, I I might not know enough about you, Liz. So I need to understand much more about you by listening carefully, observing, and sitting in that space of really learning to avoid diving in with an assumption that you're gonna think, well, cheers, you didn't even get to know me.

SPEAKER_02 15:39

Yeah.

SPEAKER_00 15:39

And it's the same with our kids, isn't it? Yeah, yeah, yeah. Yeah. And there's always been, isn't there, this well, I hope we're moving away from

Culture Communication And Dropping Assumptions

SPEAKER_00 15:45

it more now, but there's been this kind of push towards making people that are different and do things differently conform. They have to do it in the typical way, whatever that typical way is, because I haven't found it yet. Um but actually like you're talking about is actually sitting with them and meeting them, come together with them. It they don't have to kind of leap over to your side and do it your way. But actually, can you meet them in the middle and find a way that you can they can do their thing and you can do that your thing? Yeah, yeah. Neither is wrong. No. How do we share space?

SPEAKER_01 16:19

Because the yeah, the whole notion of typical for me is annoying because as a species we're not. Yes. We've never been meant to be neurotypical. It's it's not even a thing, it's totally a misnomer. And because we're not. We've never meant what we've had are narratives wrapped around difference. Because I say in the book, I believe the biggest thing we don't fear difference. What we fear is what it reveals. So it reveals our true selves. In the face of someone like my daughter who is rootedly radically authentic, not everybody's comfortable with her being so utterly tied to her link. It's about what it shows up in them, it's mirroring back to them the vulnerability they might feel in themselves, the stuff they've never dealt with, the fact that being different costs them. So they don't show that. And here's a young person, like, I don't care, I'm just gonna be me. If you are struggling with something, it's harder working in that space unless you've owned your own truth. Yeah. That's what it shows. That's what it creates is a sense of vulnerability for people that they're not comfortable with and discomfort we naturally pull back from, don't we? Yes. Anyone do that? It's not nice.

SPEAKER_00 17:39

It's just like that's the work. I was talking to another author, the actually funny enough, the other day, and she was talking about despair and how we don't like to sit with despair, and sometimes we need to. We really need to sit with that despair to be able to find the next step forward. But we constantly like, no, I'm not gonna feel that.

SPEAKER_01 17:59

Yeah, yeah. Let's not have anything uncomfortable, and also current society and the structures, the systems, social media, we're being geared towards you don't need to do discomfort, do perfection. Just do this, and everything gets solved. And we're constantly being sold the quick fix. Yes, but it's not making us happy because those things don't work, you know. The long-term stuff that really shifts and changes who you are is the work that we all have to do. I know I've done it myself in the last six years, and that's digging into the stuff I was not comfortable about, about me, understanding myself, reflecting on stuff I I'd done that I I wasn't I wasn't happy with how I'd reacted in moments.

Responding Not Reacting Through Self Work

SPEAKER_01 18:45

There was self-work to do. Like we've all got to do this stuff, we've all got to own our own lane and be responsible for how we react and respond in the world. Because at the end of the day, everybody's human and the person we're interacting with has a backstory. We don't know what it is.

SPEAKER_02 19:03

Yes.

SPEAKER_01 19:03

They could have had the worst morning of their lives. Do we really need to be screaming at someone who is having the worst time of their lives? Like that's you know, a lot a really strong example. But when I think about how mad I was all the time carrying around this loaded utter fury because of what happened to my daughter, I nobody wanted to share a space with me. I wouldn't have wanted to share a space with me. That's toxic. That doesn't say come and have a chat and let's sort things out. That says I'm just gonna like and and it's totally righteous. It is totally because we get to that point. People have pushed us to that point, but to step change and get out into a different place for yourself and for your young person, I found that step changing and not reacting works far better. So a considered, paused response changes everything. Somebody has to stop um allowing it to go round and round and round. So the minute you step out, and everybody can do this, whether you're a therapist, a professional, a parent, yeah, you can you we all have the power to step change. And the minute somebody goes, Oh, I'm not gonna go that way, I'm gonna go that way. Everyone goes, What are you doing? Where are you going? Where are they going? Yeah, but something has to move with it, doesn't it?

SPEAKER_00 20:26

Yeah, absolutely. Where are we going? It's not accepting it, isn't it? I think some some people are trying to offload stuff onto you, and you can go, no, thanks very much.

SPEAKER_01 20:33

I'm not having that. You can keep it. You can keep it. It's not yours to carry. I always say to people, you know, the only thing you are actually in control of is you. Nothing else. And it's not yours to carry. It isn't. You mustn't take it personally. It is somebody else, you know, leaking out of their space. That's on them. That's not on you, it's not for you. If you react to everything, you will end up worn out, stressed. Well, it will make you ill. You know, you have to be able to say, that's not mine, I don't need to take it on. I'll stay in my lane, I'm gonna stay focused, I'm gonna I know what our how I'm gonna be in the moment. I'm gonna respond, I'm not gonna react. And yeah, we get it wrong as well. So we have to make room, we have to give grace mistakes because we're human, we mess it up all the time. I regularly do that. But I am aware when I do it, and so I'm consciously aware, and I know that if it's with someone else, I need to repair that. So it's saying sorry, it's saying, Oh, mum totally screwed up there, sorry. I'm just a human, you know, don't always get it right, don't profess to. And it that in itself shifts everything, you know, and I think it it's breaking generational patterns when we do stuff like that.

SPEAKER_00 21:50

Yeah. So this sound this book feels like it's big, Ellie. This has got some meaty stuff in it that actually I really try.

SPEAKER_01 22:00

To be relatable, Liz. I'd like I didn't write it for a particular group of people, I wrote it for everybody. My vision for this book was the relatability of the human experience. Yeah. So I used our story to bring people in around a story. But then the way I wanted to talk about the lessons Ella gave us, every chapter was called a lesson, a lesson she gave me. And I really thought about what it is she was teaching me in those moments. And those things are are relevant, whatever your life experience is. They're not disability or sen things, they're human things. And I wanted people to start really questioning this the way we are with one another, the way we share space, like you said. How do we show up and agree to disagree? Because we need to. How do we stop attacking each other? How do we accept

Why The Book Is For Everyone

SPEAKER_01 22:55

the beautiful, varied beings that we are? You know, my daughter's blind, she can't see what you look like, she does not care. But she sure as hell knows how you show up in a space because you're vibing it in. And this is the stuff that's important. You emotions are contagious. We know through uh neuroscience that we're all affecting each other all the time, and one tug on the spider's web has an effect way down that web.

SPEAKER_02 23:20

Yeah, maybe.

SPEAKER_01 23:20

But being really consciously aware of everything we do affects somebody somewhere. You know, what's the pulse of our intention? What are we owning our lanes radically? If we want to be really authentic, we've got to be able to look at the stuff we don't want to look at as well as the stuff we do want to look at. Like elegance.

SPEAKER_00 23:39

You know what? I think I can think of there's a couple of people that are quite famous in the world at the moment that are making some decisions that could do is reading your book. I'm not gonna name names, I'll probably get cancelled. Feel free to send them. I think this book needs to wing its way under their nose. What we're gonna do, Ellie, is we're gonna your book sounds wonderful. I I I can't wait. Is it out on audio?

SPEAKER_01 24:03

So we are recording it. So, yes, we have the wonderful Joe Rook, who is the face of Amaze. If anybody knows about Amaze the House drawer. How I met Jo, I told you I won't go into it here, but it was very serendipitous. I was like, oh, what's going on here? She's amazing, she's got a beautiful voice, and um we're working on recording. I I can't say when it'll be out because it keeps moving and shifting, but I'm hoping by the summer latest, this audiobook will be out there on Audible. Perfect.

SPEAKER_00 24:33

But the book itself is already out, so people can go buy that, and I will put the links for that in the show notes. And I will also put all the links for Ellie as well. Because Ellie, you also, just briefly at the end, you also do something called flip the script. Flip the narrative or flip the script? Flip the narrative, yeah. Flip the narrative. Do you just want to give people a little bit about what that is that you do? Because I will also put some links for that in there as well. I do. I hate what you do.

SPEAKER_01 24:59

I'm Mary Poffins,

Audiobook Plans And Flip The Narrative

SPEAKER_01 25:00

Liz. Yeah, rock up where people need me, I do some stuff, and then when they're doing it themselves, they don't need and I go again.

SPEAKER_00 25:09

That is it. You know what? That's the exact phrase that I use as well. I'm Mary Poppins with an OT degree words and a motive.

SPEAKER_01 25:16

You sort of go in and go, yes, but everybody actually knows how to do this. Everybody's forgotten because we're all completely drowning in speed stress, do this, do that, too much pressure. So I go in and go, right, for the day, we're gonna take all of that off, I'm gonna sprinkle some magic, we're gonna talk about the stuff you actually know and remind you you know it. Boom, yeah, you're doing it yourself, and you don't need me anymore. Off I go. And that's what I do. So I kind of reactivate what I think people already know. I remind them that we need to flip things around. So the way we talk about young people like Ella and other young people, but indeed any human, we've got to think about what we're saying because none of us are really any different to the other, and we all have the same label, human. So we've got to think about in this interconnected space we live in, how we affect one another and the language we use, because our words are so powerful and they stay with people for a long time. Or certainly the feeling, like Maya Rangelou said, you know, you might forget what people said, you will never forget how it made you feel. We've all had that, and it's that, and for any child or young person, whether they use language or not, you don't know how this stuff's landing. So you have to be really careful about what you're saying, because you could change your life. It's a sliding door moment, what we say, what we write down in a file, how we share information, how we talk about anyone. It's it's really powerful, this stuff. So I really talk about let's flip it round, let's look at it differently, turn it on its head. What do you see now? Um, you know, it's like optical illusions. You get people to look at them, everyone's gonna see a different thing. Yeah. So what's the right one? You know, it's like it's like that. So I just get people thinking, I like say Mary Profession said, just sort of come in and do a bit of that, whatever it is.

SPEAKER_02 27:08

And I love that I go again.

SPEAKER_00 27:10

I feel that as well. Is that people they do have those skills, they're not less of a person just because they're having a hard time. And I think you and I are quite aligned in that in the way that we work. Again, that I work with um people that we support. It is very much that you've got it in you, it's just sometimes you've forgotten, or sometimes everything is so heavy that you can't find it. And I talk about borrowing someone else's brain for a bit. You just have to borrow someone else's brain to kind of get you through to the next step. So I will put all that in the show notes. So where you can find Eddie's book, I'm gonna keep an eye out for the audio coming out and where you can find Ellie and the support that she does offer as well. And that just leads me to say, Ellie, thank you ever so much for coming on. I say I love the name of the book, really excited to dive into it through audio. And I'm sure there'll be lots of parents out there that are really interested to have a listen of it. But thank you ever so much for joining me.

SPEAKER_01 27:59

Oh, thank you, Liz. It's been an absolute pleasure. Thank you so much. Thanks, Ellie.