An inspiring book about dyspraxia

Victoria Biggs, Caged in Chaos

Eoghan Ó Nia interviewed by Conor Kostick

CK: What is dyspraxia?

E Ó N: In very general, broad terms, dyspraxia is a learning difficulty which has to do with your hand-eye coordination. It can be very basic stuff like even reaching out to pick up a cup. Depth perception can be quite difficult. Enough times I’ve reached to grab a cup, I’ve not grabbed onto it properly and dropped it. It’s very basic things like that. Things like walking in a straight line can be quite difficult. Also, fine and gross motor skills. Gross motor skills are things like driving a car, riding a bike, very difficult things to do, and then fine motor skills are using your fingers, like eating food. For example, eating something like chips. I prefer using my hands to eat them rather than using a fork because that’s just very difficult for me. There’s a lot of different things that you can drill into, but in a general broad context, that’s what dyspraxia is.

CK: How common is it?

E Ó N: I don’t know other than in Ireland where the prevalence is six percent among five to twelve-year-olds. When I’ve said it to people, ‘I have dyspraxia’, the majority of those I’ve said it to do seem to know what dyspraxia is or have a basic understanding of what it is. Certainly enough people have it. And I have a good few friends who have it. I would say it’s relatively common enough and people have a good understanding of what it is.

CK: I’m going to get round to how to be inclusive if you’re campaigning or a political party, but having dyspraxia must present learning challenges?

E Ó N: Very much so. Even when you mentioned there about political campaigning. The manifestos and publications that parties put out can be very wordy. You have these big, long articles that someone with dyspraxia or dyslexia definitely would not be able to access. I think in a general sense you need to make the actual material – the manifestos and leaflets – you don’t have to simplify the ideas but you do have to express them simply. Don’t use over-complicated words and make the material something that’s easy to understand and gets to the point.

CK: Do alternative formats like audio and video help?

E Ó N: Definitely. I have dyslexia as well as dyspraxia, so that adds another layer to it because there are people who just have dyspraxia. I’m a kinesthetic learner, which basically means I learn by doing. For example, I learned a lot about politics from just being out in the general election and canvassing. That’s how I learned and picked up things and absorbed the information. Just having a mix of things and having a varied amount of consciousness.

Reviewing Caged in Chaos by Victoria Biggs

CK: You’ve been reading an important book about dyspraxia to review for Independent Left.

E Ó N: Caged in Chaos by Victoria Biggs. When Victoria Biggs wrote the book – originally in 2005 – she was a teenager. She was sixteen-years-old, so still going through secondary school. And she’s struggled with dyspraxia most of her life, since primary school I think. She got the diagnosis of it quite young. The book itself is mostly about her experiences in secondary school, because at the time that’s what she was still going through when she was writing the book, although there are a few mentions going back into the past of primary school.

CK: Did you find it helpful reading it? Did it resonate with your life?

E Ó N: The comparisons were really just astonishing, at times it felt like I was looking in a mirror in a way. Because even in the first chapter it was almost like pretty much looking in a mirror between me and her. Just the struggles, the fact that the basic things that she struggled with really resonated with me. Because the main point about the book that I would make is that it was written by someone with dyspraxia who, when she was writing it, was still going through school and struggling with all the bullying and all that sort of stuff. It’s written by someone who’s actually been through it, so it’s quite raw. It’s quite emotional. It’s very real. It’s just brutally honest about it.

CK: You mentioned bullying there. Do you want to say a bit more about that?

E Ó N: This is a good point which I’ll tie in with my own experiences. There’s a whole chapter in the book about bullying, about the things that people in general with intellectual disabilities are bullied for: the inability to spell, obviously the bullies would jump on that. ‘Ha, ha, you can’t spell a word.’ But Victoria Biggs would respond by saying, ‘Look, I can’t spell a word, but I do at least know what the word means.’

What I found in the bullying chapter was quite amazing because obviously I didn’t have the book when I was in secondary school and I wish I did. I really wish I did, because that would have been so helpful. Victoria Biggs, like me, developed a coping mechanism around making fun of herself, which helped lessen the impact of the bullies laying into her because she was making fun of herself. And that’s exactly what I did. And without even ever reading that book before or knowing about her, I did the exact same thing.

CK: Did you pay a price for that? Did you have to lower your self-image by doing that? Or was it a way of just deflecting?

E Ó N: It was a way of deflecting it. She mentions that although it’s a good coping mechanism, you have to have a high opinion of yourself to be able to do it right. Because when she started doing it, and especially when I started doing it as well, I would have felt like that. Very negative about myself, and it wasn’t helping, but as time went on and I got used to it and I was able to build myself up. It’s just been a part of my humour which means when they would insult me, it would deflect the impact and it was the same for Victoria Biggs. Of course, not many people get the whole thing of the self-inflicted humour. Some will say, ‘Oh, don’t insult yourself,’ and you have to explain you’re not really doing that.

CK: And it’s proven to be a good skill because you’re now pretty sharp at humorous political memes. Maybe developing a strategy of humour has been a bit of training for that.

E Ó N: I think so. Like when an article in the Irish Times covered how people are going to have difficulties with social norms post COBID: like shaking hands. And I put up a meme in Simpsons fans and I just said, ‘Me as someone with dyspraxia who struggles with social norms.’ And it just said, ‘Ha, now you know how it feels.’

An awkward moment for Aodhán Ó RÍordáin during an RTÉ interview:

What does Victoria Biggs’ book about dyspraxia say about school supports?

CK: Did you and Victoria get any support in school?

E Ó N: Victoria Biggs had a good deal of support from her parents and from her family. One of her teachers supported her indirectly without her knowing. Which she said in looking back on it all now, annoyed her. She would have preferred if that teacher had just been honest with her. For example, they’d have to clean up their dormitories. The teacher would make sure that Victoria Biggs was alone when she was doing that because otherwise the other kids would judge her for taking longer to do the cleaning. But she makes the point that she would have preferred if the teacher had have actually been open and honest about it instead of just being helping in a sneaky kind of way.

As for me, I got the usual learning support. That was very good. In fact, actually it was the learning support teacher in my third year of secondary school (I already had dyslexia at that point) who spotted my dyspraxia. I was doing a test in relation to dyslexia and I was struggling with using blocks to make words. I was finding it hard to actually pick up the blocks. And the support teacher rang up my mom and said, ‘I think he has dyspraxia’. I was referred for an assessment and sure enough was diagnosed with it. If it wasn’t for the learning support teacher, I wouldn’t have even been diagnosed with dyspraxia.

CK: Does Victoria Biggs end up advocating for change or policies? What would she like to be different about the world to make it more inclusive for people with dyspraxia?

E Ó N: The main conclusion that she draws with the book is the need to raise awareness for dyspraxia itself and getting people to understand what it is and all the different aspects to it. Obviously, the book was written originally in 2005, so the supports and services in place then were very poor. Dyspraxia was only really a relatively kind of new thing. A lot has changed since then.

I think another point is that when you do the assessment of needs and all the different supports that are there outside of school, they are all designed for children, which isn’t great for teenagers or adults with dyspraxia. Increased support after childhood is also something Victoria Biggs is calling for. We don’t have any supports for anything designed specifically for teenagers or adults.

Advice for inclusive political parties and campaigns

CK: Any tips – this is probably more for you than from reading the book – but any tips for people who are running campaigns to make sure that they’re inclusive and that people with dyspraxia can be fully involved?

E Ó N: First of all, I’d say each intellectual disability presents its own challenges and for someone with just dyslexia and someone with just dyspraxia, there’s going to be two different approaches. But at the end of the day, the experts on this are the people with those particular disabilities. They’ll know what they need and they’ll know where they’re struggling. It’s probably not very enlightening what I have to say, but sometimes – and with the dyspraxia especially – I focus my brain on doing the basics right first, rather than trying to do anything over-complex. And sometimes I feel like people in politics miss that, that they don’t do the basics right. Talk to people with dyslexia, talk to people with dyspraxia and ask them to look at your campaigns and your parties. And ask them: is this something that, regardless of whether you agree with it or not, that you could engage with? That you could involve yourself with? That you can understand what we’re for?

Also, if you have someone in your party or organization that has an intellectual disability, again, talk to them. Let them speak for themselves. I remember after the general election Sinn Fein had a couple of Facebook ‘live’ on intellectual disabilities. Which were good. I liked them. But again, it was mostly just the representatives and the ‘experts’, not really anyone with a disability. Parties have to involve the people with the disabilities in the actual discussions.

CK: It’s a simple tip, but it’s really important. And it’s surprising how often that doesn’t actually happen. Is there anything about the book you particularly wanted to highlight?

E Ó N: I don’t agree with how there’s always a focus on the famous people that have a particular disability. But Victoria Biggs was saying that although not confirmed, they believe that Churchill presented with symptoms of dyspraxia, or development cognition disorder as it’s known now. And so did Eisenhower and Montgomery. So although I’m not a fan of Churchill, I did like the quote in the book that three disabled people kicked Hitler’s arse. That was brilliant, to be fair.

Most of the chapters are obviously about people with dyspraxia themselves, so it’s going through things like how you struggle at home, how you struggle with exams. Growing up and trying to be an independent person. But the thing I would say about the book itself is it’s a good read for non-dyspraxics, because it gives everyone a good idea of what people with disabilities struggle with. And when you read through the book, you appreciate things that you wouldn’t come across otherwise, like tying a shoelace: for someone with dyspraxia, that can be a daunting task.

Like myself, she has that kind of self-inflicted sense of humour. You do get a lot of jokes where she’s poking fun at herself. It’s a very good read. Obviously it’s written by someone with dyspraxia, so it’s not difficult to read through. It’s a very approachable book. As someone who struggles with reading myself, I read one chapter a day, but obviously someone who’s more advanced in reading skills could get through it in a day. It’s especially good for parents of children with intellectual disabilities in general, not just dyspraxia. I know that this book is about people with dyspraxia, but I think it gives you a broader understanding of any kind of intellectual disability. It gives tips for everyone who’s around that person as well. Like, ‘Here’s good tips for parents when it comes to exams’ or ‘Here’s four tips for teachers when it comes to exams’.

She makes an interesting point about growing up in Saudi Arabia. Surprisingly, it wasn’t as bad for her there as when she got to England. The Saudi’s accepted her for who she was, the culture was dyspraxic-friendly; it’s quite a difference in culture that a conservative country like Saudi Arabia, without even trying, was dyspraxic-friendly.

Another important point she makes as well is that you can really do anything. As much as it can be disheartening talking only about all the different struggles that we go through, she says you can achieve a lot. Certain jobs like working in a supermarket might not be feasible but with education, there’s no reason to limit yourself. A lot of people with intellectual disabilities do actually go on to become teachers. Victoria Biggs gives ideas for different careers that you can put yourself into. Now, she doesn’t mention politics, but I’d recommend politics myself. She encourages you to push yourself. Herself, she’s just completed her doctorate in the University of Manchester (on storytelling and memory among Israeli Jewish and Palestinian youth), which is very impressive. Obviously, the main points she makes is you have to think in a different way than most and do things differently, but really, as long as you’re willing to push yourself in what you believe in, you can do almost anything really.

It’s also very good that she gets a quotes from other people with dyspraxia and they address their struggles in relation to the different chapters. I find that’s very good. There is one of these quotes that struck me: ‘If I could attach a printer to my brain, I could prove to people I’m not stupid.’ We have such an issue getting our thoughts and beliefs across, but our brain, it’s all up there, it’s just getting it out. That was my favourite quote from the book.

Dyspraxia resources and further reading for a good book about dyspraxia

Victoria Biggs has a blog here.

Dyspraxia Ireland has a wealth of resources here and a reading list of books about dyspraxia here.