Episode 15: Dyslexia - A 'specialisation', not a disorder

Published Aug 30, 2024, 5:00 PM

In this episode Sonia Gray finds out how vital people with dyslexia are to the survival of the human race  - they're the explorers, creative thinkers and problem solvers.
She talks to poet and playwright, Dominic Hoey, who has written award-winning books, despite his reading challenges.

And dyslexic researcher and champion, Dr Ruth Gibbons, talks about the importance of movement for dyslexics. 

GUESTS:  

  • Dr Ruth Gibbons - Massey University Social Anthropology lecturer

  • Dominic Hoey - Writer
  • Oliver and Amy Williams

RESOURCES:
The Dyslexia Foundation of NZ
SPELD
Learn To Write Good

Good evening.

My name is Turette's is a poem called the New New Zealand.

Terrees otherwise known as Dominic Hoey novelist, poet, playwright.

And with the graffitist commission. None of the fights are worth winning. No one cares about your life, just what you do for a living.

Publisher, rapper and profoundly dyslexit for you.

And other day jobs. He work that no one else would do, so we could follow our dreams at night, like you told us.

To, Gelda. I'm Sonia Gray and this is no such thing as normal. Series two, I'm diving into the complex and fascinating world of neurodiversity. I'm not an expert, but my daughter is neurodivergent and a few years ago I was diagnosed with ADHD. In this series, you'll hear from experts and from many wonderful people who experience the world in a unique way. We're looking at neurodiversity from the inside. This is the second of a two part focus on dyslexia. In the last episode, I talked to twenty three year old Michael, who buys and sells supercars for a living. It's a dream job. Michael's profoundly dyslexic. He can read when it's a topic of interest to him, like supercars, but fictional writing just doesn't make any sense. I could read your book, it would make sense to you, guys, wouldn't make sense to me now. In this episode, I talked to dominic Hoey, best selling novelist and poet. Unlike Michael, dom finds it almost impossible to read or write anything that's not fictional. It's fascinating. We can't assume we know what strengths or struggles any one dyslexic thinker might have. Dyslexia comes in many flavors, so dyslexia a loaded word and misunderstood. I think, how did your diagnosis come about?

I was probably, I want to say, like thirty, and I went to university as an adult student. I kind of knew something was up because I'd been in special education and I still can't write.

My hand or spell and stuff. I didn't know exactly what it was.

I suspected dyslex yet, So anyway, I went into the test, and I thought that'd be like, oh, you're a little bit dyslexican, but like, no, you're very looking disabled.

So how to feel.

There was a bit of relief, but there's also a lot of frustration that I kind of wish someone had told me when I was seven, or you know what I mean. I mean, there's definitely advantages. I think you know, and you have a certain level of grit and tenacity and stuff. But I do wonder, if you know, all the sort of self loathing and low self esteem and stuff, is it worth to sort of payoff?

I don't know.

It's tragic that almost all dyslexics have a deep sense of shame. Would it have been different for Dom if he'd been diagnosed as a kid, Well, it's unlikely he would have been. An assessment is expensive up to fifteen hundred dollars these days. That would have been out of reach for Dom's family, who didn't have much money. Poverty and the disadvantages that come with it as central to his writing. You always wanted to be a writer. M tell me about that.

I don't know where it came from, Like I guess because like when I was young before I couldn't read to us about eight or nine, and my parents had just read to me all the time, and I was always like kind of like just like I loved stories and I loved you know, I was always making stuff up from a super young age. I just think because I was asking my mum kind of recently. I was like, did I talk about being a writer when I was young? And She's like, yeah, you did, but you know, you couldn't read, so we were kind of like, maybe this isn't the thing for you. And then when I learned to read, my dad was like, oh, if you want to be a writer, she just read all the time, and so I did. And he actually had a library, like a room just full of books and I kind of read all of them in a lot of strange stuff. But I think that really helped as well, like to sort of develop the style I have.

Did you've got quite a unique style? Line?

Yeah?

Good unique style.

Yeah.

I mean, you know, it's not for everyone.

People love or hate it, but I think that's a good thing, you know, And I think that comes from just having taught myself mostly, you know, and also like I learned a lot about writing from rapping, which probably unusual for miss novelists, you.

Know, Don Joe started out as a rapper under the name to read poetry was a natural progression In twenty seventeen, his first novel, Iceland, was published, and it's most recent is called Poor People with Money. I read your book Poor People with Money. Loved it.

Oh thank you, I tell you.

One of the reasons I loved it you right in a way that's easy for someone like me to read. Now. I'm not dyslexic, but the way I read a book is often it's not really that linear. But I found myself being able to read it in a linear way because it wasn't too dense. Did you do that on purpose or is that just your style?

A bit of both.

Like Penguin had been super supportive, but I think I've had to fight for a little bit because I think that they were like, why don't you make the chapters a little bit longer, make the book a bit longer, make it more like a traditional literary thing. And I was just sort of like explaining, well, this is kind of my audience, or this is the audience I really care.

About, and there's a shitload of books for the other.

Audience, exactly exactly.

You know, of course, the material is enjoyable and funny and deep and gritty and all the things, but just that fact that I didn't have to think. It's yeah, thank you.

I mean that's the greatest compliment, you know.

And like when people say stuff like that, you're just like, oh man, it's like crazy, because good you have to entertain, you know as well. And I think a lot of writers forget that.

Yeah. Yeah, they're very busy creating this beautiful prose and yeah it's just too dense.

They're trying to be clever, you know, clever.

Yeah, yeah, yeah, it's interesting and we all want to be clever. But if it stops people reading it, then yeah, if no one's reading you're clever, then you're not that clever. If you haven't read any of Dom's work, do it, he is clever. The first time I read a Dom Harry poem, I was like, how does he know what I'm thinking and feeling when I don't even know he's a master with words because he doesn't use that many. But just because he's a writer, it doesn't mean he likes all words all the time. Like filling in forms quick and easy for most people, for Dom it can be impossible.

I'm like, I can't do it, sorry, So what is it?

Tell me what it is about a form that is difficult and what Sorry not to press on it, but it's just interesting so that people understand what specifically is it the writing itself? Is it the putting the words together?

Yeah, I think it's just I don't.

I mean, this is just me speculating, but I think what it is is like whatever part of your brain does creative writing, I've developed that, but I started from the union like negative, but the other part of my brain I didn't develop that non creative writing, and so I feel like that's still in the dyslexic thing, you know what I mean.

Like I think.

Ironically, like I can't really it's quite difficult for me to write stuff that's not fiction. So I think I've taught myself to write fiction and I can kind of write an email, but.

That's about it.

Like if I have to write anything else, I find it incredibly difficult. Just sometimes I feel like I describe it like there's a wall in my brain and sometimes I just hit that wall and it doesn't matter what I.

Do, I can't get beyond that.

And I think oftentimes nonfiction kind of writing like guess why, Like funding applications are just a nightmare for me because you know what I mean it's like you're bending your arm.

In a way it doesn't want to bend, or something. That's what it kind of feels like.

I think this is crucial to understanding the struggle of dyslexics and neurodivergent people in general. They can be great at the things that are supposed to be difficult, like in Dom's case, novel writing or poetry, but not so good at the things that are considered easy, like filling in a form. You can be a writer of award winning best selling novels, but you don't get a US on the Edmond.

So me and my mate who's also dyslexic, we were probably about twenty five and we were just like cooking and just terrible places. And we're both like, we're going to go to university. We're going to turn our lives around. So we walked down to the university and we're like, we want to enroll, and the guy was like, Okay, here's all these forms, and we're like oh, And we spent about an hour trying to fill the forms out, and then we were back to going like we can't do this, and he's like, well, if you can't feel the forms out, he can't come to UNI, and so we just left and that was you know, so it was probably another five years after that that then they got computers, so then I could enroll.

You know, you got the RDE block before you've even started.

Yeah, I mean, and I think it's like that's the thing with just six here. Like I tried to pevson level of pride in it and bravado and talk about how it's like help me and all this shit, but like, definitely, my life is I feel like I'm always five or ten years behind where I probably should be if I didn't have this or if you know that there were the systems to support people with this, you know what I mean.

So only really in the last ten years, I think that.

I've got to the point where I don't let that stuff stop me, and you know, if there's a system set up that you know, like I'm like, okay, well you need to sort this out because you can't not let me do this or whatever. I was had a dentist the other day though, and she's I spent the receptions ask me for that form, and I just was like, oh, I'm dyslexic. Do you think you could do it? For me and people are usually pretty understanding.

You know.

Is that quite liberating when you do that?

Yeah, I mean it's a relative I guess that's another thing that sort of is in the last ten years I've.

Started doing and you know what.

I mean, just like really owning it.

It's taken do a long time to own it. He's in his forties now, but can it go even further? Move from shame through acceptance all the way to celebrating his dyslexia. New research shows that evolution has kept dyslexia and our gene pool for a reason. This unique way of thinking is critical to the survival of our species. If dyslexics weren't needed, they would have been like evolution would have extincted them distinct. So there is a reason that for different cognition. And so it's a specialization, so you don't there's many people that can fill out forms. Well, AI can do it now. So like it's an exciting time to be dislexit because you're not going to have to do all that stuff. I hope, I don't think. But we need the explorers, the disruptors that I see a solution to that problem. No one else has been able to see it.

What's it called, like the telescopic kind of thinking where you can see the end of something, Like I think that's something that I've noticed that I have that.

Can you tell me about that? Because that is a big thing.

So like when I start the novel, it's like I can see the end, Like even if I don't know how it's going to end, I can see that I'm going to get to the end. Like whenever I do anything, I can see how to get to the end of it. I guess, And I didn't realize that was rare until, you know, I guess when I was making music with like super talented people, but they couldn't do that, and often they wouldn't finish their songs or they finished their albums because they couldn't see that kind of end.

Put this ability to see the end point reminded me of doctor Ruth gibbons comments in last week's episode about the different way dyslexics often do maths. My daughter can provide the answer to a complicated math problem, but she often loses marks for not showing the working because the way she got to the answer isn't something she can write down.

That's a natural way for dyslectic to work. DYSLEXICX don't think in a linear way. Dyslexics are much happier when they have multiple pieces of information that they can bring together into one point. So when they're doing something like maths, they will be bringing those things all together to get the answer.

But you still have to show you working. So many of the skills that dyslexics possess aren't definable or measurable, but that doesn't mean they don't exist or that they're not very, very valuable. Research out of Cambridge University is found that dyslexics have enhanced abilities and things like discovery, invention, and creativity. They say developmental dyslexia should no longer longer be considered a disorder, but instead a specialization, which is exciting and I wonder if dorm's aware of this dyslexic age.

To be honest, I still don't know a lot about dyslexia other than what my experiences.

Are you interested in it?

I kind of am.

I think there's sort of like a lot of trauma around it, Like I get I get quite emotional when I'm reading about other people's experience. It are sort of like minor stuff, So I guess maybe I kind of avoid it.

Do you think a lot of it comes from school?

Yeah?

For sure, for sure, like because you know, like special education was just like it was pretty much just like a holding cell, like they destructed all the kids that didn't know what to deal with in there. And then also just like being told you're stupid for years and sort of not I guess, you know, like part of me sort of thought, well, I don't think I am. But then you sort of like if your teachers are telling you that, you're like, well, I guess that's the job. You know, they must know what they're talking about.

So I think, yeah, well did special education look like?

I'll sort of in and out of it throughout my all my schooling, so sometimes that put me back into mainstream. But in primary school, it was just this classroom just for a flight deals a deaf kid. There was like a with a school bully and just all of them.

I don't know what I'm laughing. It's just like it's like a whold itself. Yeah, the misfits. Everyone knew that if you did.

That, probably weren't going to get a job, and that and that again was just a holding solf because you know, like you had kids in there who were brilliant at some stuff in life.

Brilliant it's some stuff, but not the right stuff. Sometimes the kids who can see patterns and solutions are hard to spot. They can often be ignored. Instead, we have accommodations to help them get better at the right stuff.

I wanted to get the extra time, you know in the exam. Well, actually I wanted to use a laptop. But then they were like, there's no way we're going to use a laptop. But the thing is having extra time. If you can't spell or handwr it doesn't really make any difference, Just longer to sit there failing at the thing, you know what I mean.

You can use a laptop now in university. In fact, university seemed to be set up super well to support neurodivergent learners. It's trickier in schools, and a support isn't a support if it's not the right support for you.

For me, it's like because I got to read a writer for a while, and so I had to say it out loud and I'd write it down. But that for me is a different part of the brain lake. I can't community you know, when I'm talking, I'm not as eloquent as I am on the page.

For those that don't know, a reader writers a volunteer that works with a student during an assessment. Generally they read the question to you and then write the answer that you give them. For some kids, it's great. For others, it's really not. For Dom the big change came when he changed schools. My husband knocked around with you, yep, back in the day, and he said one of things about you, but also that you went to a school that I'd never heard of called Metro Auckland Metropolitan College. Yeah, can you tell me about that?

Yeah, so that kind of I think that really was like maybe talking about that trajectory. It was one of the turning points actually was I was at Western Springs and just was having a pretty horrible time and then they basically kicked out a huge amount of kids. I don't know why exactly, and we all went to Metro. And so Metro was an alternative school in Mount Eden. It was just like a two storied building. There's one hundred kids there, and it was based on this model where kids loomed best when they want to loun and kids got to vote on what classes they had and all this kind of stuff, so she didn't have to go to class, and I just spent the whole time writing poetry and playing the drums pretty much. There was a class on Marxism, so we had a class on Marxism, So, you know, I left school without I didn't really have any sort of practical skills, I guess as such, but you kind of had an advantage because I'd been writing poetry for two years and getting lessons and performing and doing all that stuff. So at eighteen, I was sort of, like, I guess, a bit further ahead of most kids my age to gone to traditional schools.

Yeah, yeah, yeah.

And the other thing was because it was so small, like you couldn't have cliques, so you couldn't be like they weren't like cool kids or whatever. Like you were all just forced together, and you were hanging out with kids who were just from wildly different parts of the city or different backgrounds. There were kids there whose parents were like millionaires, and there were kids there who were like sleeping in the cars and everything in between. So and we were all hanging out, you know, and I think that was pretty incredible.

Dom says this school was fundamental to a success. But this kind of state school, it doesn't exist anymore these days. Dom wears a lot of hats. He co founded publishing company Dead Bird Books. He co founded a Define, a program for disadvantaged youth, and he mentors dyslexic kids in writing. There's a common thread through all his mahi helping those who are struggling.

I really think that if you're an artist that has a profile, part of your job is to bring to other people like you belong and it makes everything slower. But I think in the long run, it's like way better than does you know you having a little moment.

Dom has defied the distincts of gods and become a successful author, but he carries the hangover from years of being told the way he was wasn't right. It's a while since Dom was at school. We know so much more now. But if that's the case, why are there's still so many young dyslexic kids having a terrible experience.

He would leave the room, or he would hide under a table in the classroom and not move for hours.

Amy is a high school counselor. She works with kids daily, but she's talking about her own son, eleven year old Oliver.

He was not a confident kid at all, and he would come home crying some days and we wouldn't know why, and he started talking about that. He just he felt different and he was sick of being told off. And I think, yeah, there was not really any I guess, how would I say care in terms of the emotional wellbeing, He would say, I'm dumb, I'm stupid, don't.

Want to be here.

He struggled quite a lot in the reading writing, and that was a constant thing that was brought up in teacher interviews and a daily thing, and he just would be pushed quite hard. So his instinct was to run.

Yeah, which is all of our instincts.

You know.

Yep.

So it was that flight response, you know. It was conformed to the classroom. And if you're not sitting on the mat in back of the class doing something else, you don't fit in here.

You're not here doing the right thing. Oliver now goes to Summit School in Auckland, which is set up for dyslexic and neurodivergent kids, but up until age eight he was in mainstream school. He got into trouble a lot. Tell me about what you struggle with the most.

I'll struggle still, like concentrating, it's really hard to just listen, or I just can't stop moving.

You were at a mainstream school for a long time. Yeah, and I imagine there you had to stay still.

Yeah.

Can you remember what that was like and if you got in trouble for like wriggling or whatever.

Yeah? Sometimes I got in trouble and I didn't really know why. Yeah, I didn't really like it.

Tell me more about that. What can you remember some of the things you got in trouble.

For, sometimes getting up and moving or like fvegishen with stuff I normally got told off.

Right, do you remember how it made you feel when you used to get told off for stuff that you couldn't change.

It made me very mad and frustrated. I just didn't want to be at school anymore.

Did you stop going to school?

Yeah?

Because you felt like whatever you did it might be wrong.

Yeah. I just didn't feel like a fit in with everyone else.

That is such an important bit that belonging a life, feeling like you're wanted at school just the way you are, is something I think a lot of kids don't have. Can I just say, here, you move as much as you want. Here, you get up and run around if you want. You don't have to stay right there. Yeah, okay, that's really important. And with that, Oliver was off up and down, wandering around. His body needed to be in motion. It makes me sad to think of him contained at school. This is a very active kid. He's a star on the basketball court and the rugby field, and he's getting into acting. You have joined an agency. Do you kind of like the whole acting performing thing?

Yeah?

I do.

It just gets of it in the thing when you're doing the audition for it.

It is and I still get nervous. Doesn't go away. But what I do is I go, Okay, I'm feeling the nerves, feeling the nerves. I'm going to take all those nerves and I'm going to use them. Yeah, sometimes it doesn't work, But tell me about rugby what you love about it?

Well, I can let out my angers. Sometimes I like to just try and get better. I like working harder.

The confidence with Oliver has changed so much since coming to a different school where he feels included and his personality is embraced, and his learning style he's actually picking up on things and then understanding it. And this confidence of I can read that road sign or I can pick that out and know what that is has really given him just this happiness. It's real and it shows through the family, through the home, through school friendships. Friendships are very hard for him, and they're becoming slowly easier.

Yeah, we all get treated the same, and everyone at that school it's like just like me. So I fell in quite a well.

Amy is delighted that Oliver feels there's a place for him at school now. Sending him to an independent school is expensive, but they believe the sacrifice is worth it. Of course, there are great things happening at mainstream schools too, but they're desperately under resourced. Many teachers I've spoken to say they feel like they're fighting a losing battle every day, but some still manage to leave an impression. Oliver remembers his first teacher with great fondness.

Her name's Miss Lalla. Yeah, she was my first ever teacher when I started school. She was the kindest.

Really.

Yeah, I made her a part and I gave it to her. I met her a couple of days ago, so yeah, I said.

Hi to her, Miss Lalla. Is that her real name?

Yeah, I don't know.

I don't actually know her first name. I've forgotten, but her last name is Lala. Of course she's lovely with a surname like Lalla, she was gorgeous. Can you remember any incidents at school that you were just like I just hate it, like one specific incident, like I just don't School's not for me. I know, it's hard to remember.

I remember one time that I just couldn't sit still when I really didn't want to go to school. So it's quite mad that they and I got told off for like moving around, and I said I wanted to go home, but they said too bad, and they just left me there, left you where like at just at school? Yeah?

Were you upset? Yeah, so it really was to me. It sounds like that. Correct me if I'm wrong. But one of your big things is sitting still, which is hard for so many kids, and then getting told off for that. Yeah, yeah, like the injustice of our day.

Yeah.

Yeah. The need to move is something I've noticed a lot with the dyslexic people I've interviewed. Staying still seems to require a lot of effort. Sure, dyslexia often coexists with other profiles like autism and ADHD and who can say where one diagnosis begins and another starts. But doctor Ruth Gibbons sees dyslexia as a full body experience.

In my research, I found out how important movement was and it was not really discussed at all. It's more talked about that being an irritant rather than actually a necessity for dyslexics.

Ruth says that it's cool, particularly high school and in workplaces, we prioritize the brain over the body and that just doesn't work for everyone.

It's all about being still and just listening and using your brain. That creates a particular assumption about how brains work, and that's not the way works for dyslexics. Dyslexics actually need to move for their brains to be engaged and working, even in the way that they think. Dyslexic don't think in a linear way. Dyslexics are much happier when they have multiple pieces of information that they can bring together into one point. So the brains have to move and their bodies need to move.

To There are kids that don't even realize that they need to move.

Yeah, absolutely, and all they know is the dialogue in their head that they are not doing as well as everybody else, and they don't know that actually just being able to move.

Would be useful.

Then there's the other kids who move and get told off for doing so. I have a participant who was rocking on her chair. The teacher took the chair away and made her kneel at a desk.

Always looking for solutions, Ruth came up with one. It's called tilt with a Y, essentially as a fidget toy for your feet. It looks kind of like a skateboard with some fancy additions, and it came about quite by accident.

I put together some courses for my students who are dyslexic on managing UNI from a dyslexic perspective, and I thought, I can't have these students sit still for hours on end whilst I do this workshop. So I went out to the garage and I got this piece of wood and put a door handle on it, and I took them into the space to use. After that, I then went back to my research participants who I've been working with the twelve years, and said, look, is this any good? Do you think this could work? And I said, yes, we just took it from there and now we're at the space and looking towards manufacture, which is exciting. Actually we just want to red Dot Design Award as well.

Oh my goodness, bro, that's amazing, and it's so simple. It's something that people can you know, it's transportable. I feel like the solution is things like this, simple changes as well as recognition and understanding, but just these little things that can make a difference. Ruth says this need for movement goes hand in hand with the fact that dyslexics are often very aware of the world around them, super sensorial.

It's actually in neurodivergent thing. It just gets ignored and devalued. You know, even something as simple as the seat not being level can mean that the dyslexic student is not going to learn anything that day because they're constantly trying to monitor that and be in this space with all the sounds and smells and your tactile things. I've got to take on as well.

Do you know what the problem is for dyslexics is that because these are overlapping characteristics of adhd as autistics, you know, like you're quite universal when your advergence. But if you're dyslexic, people don't know about the sensory side of things. They experiencing so much of the world that's very you know, it's just the reading writing thing has dominated, hasn't.

It always literacy? It's always the big focus, and because of that you miss out on all the other information. A lot of research that's done it has a very literacy focus, and therefore you get a very particular type of information about that. If you don't look broader into more aspects of what it means to be dyslexic, it also means too then oh, we can cure the dyslexics if we just get them to read. And that's not the case at all. And I've found that with when I've done focus group work. You know, people have come and they said, well, I want you to thought that was going to help them to cure their dyslexia. By the end of it, they're going, what am I.

They cueuing for.

I'm absolutely fine. What I've got is incredible and creative and of these incredible abilities and they just hadn't seen that before. It was through being with other people and exploring and discussing that they found actually their identity had an awful lot of value.

Back with Dominic Hoey, I'm introducing him to Tilt Ruth's skateboard like foot fidget, I reckon. He might just find it helpful. You're probably going, what the hell is you're pulling out of this bag? M h Yeah, I'll explain it. So it's based on the fact that a lot of the time dyslexics need to move in order to think that.

Do you you've the whole time? I just I just fidgeted like the whole time.

Ah right, Okay, So this is called she. So she designed this, Ruth, doctor Ruth. I love her. So you put it like down there and then you put your either side and so say you're working at a Yeah, so you're doing that, do you reckon? And obviously this is a very short experiment for time purposes. Do you think that kind of thing might help you?

Yeah?

I like this, do you Why?

Well?

I'm just always moving and it's like and it drives people crazy, you know, like because if they can see your hands and you're tapping.

And yeah, yeah.

I always rip up bits of paper and break pens and stuff. So I have to go to board meetings and everyone else is like, yeah, like neotypical, and then I'm just like the whole time, I just like and my mate is just like just sit still, just at least pretend you're listening, like, don't close your eyes.

Like formality. Yeah, I find formality quite tricky.

Yeah, so do you know that that's helping your brain works?

So funny, it's like I'm just like really relaxed.

I don't have brought it.

Out at the start. I don't know. It's like it's like magic.

And all the songs we wrote and all that paint we spilled, and all the shows we played for free, all of this was for you, and all the day jobs you worked that no one else would do so we can follow our dreams at night like you told us to.

Thank you.

Next time on no such thing as normal.

Like comedy has been so important to me. And the thing that I found was like I found the greatest success when I started to lean into more being myself on stage.

People like they like that.

They like when you are yourself and you're not trying to be anything else as much as you think, oh I'm not like everyone else, that it's actually a strength. And the people that love you, They're gonna really love you, yeah, and they're going to meet you in your own terms.

No Such Thing as Normal is produced and presented by me Sonia Gray. The editor is Jamie Lee Smith. Arwen O'Connor and Mitchell Hawkes are executive producers. Production assistant is Beck's War. The series is brought to you by the New Zealand Herald and Team Uniform and it's made with the support of New Zealand on air. If you like this podcast, please rate and review it it helps people find it. New episodes of No Such Thing as Normal are available wherever you get your podcasts.

No Such Thing as Normal

At least 20% of New Zealanders are believed to be neurodivergent, but there is very little awareness 
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