Book review: That’s So Chronic podcast
TRANSCRIPT
Jess Brien
Welcome to, That's So Chronic. And today's episode of That's So... With me, Jess Brien. That's So is a monthly series here at That's So Chronic, where we get to chat about books, films, interviews, literally anything and everything that's in our that's so chronic world. Today, I am joined by...
Diana Devine
Diana Devine.
Jess Brien
And we are discussing Kelly Vincent's book, Dandelion Heart. Welcome to, That's So Chronic.
Jess Brien
Before we hear from Diana Devine, who you might recognize from their interview back in April 2021 about their diagnosis of hypermobile Ehlers-Danlos syndrome, I thought I would read you out the blurb of Dandelion Heart and give you a little bit more information about the author, Kelly Vincent.
Jess Brien
Dandelion Heart is a love letter to all of the minds and bodies the world is still trying to force into a mold-long broken. Dandelion Heart was published in 2021 by Debut Books and is a collection of essays and, poetry which grapples with disability in an identity driven world. Exploring powerful themes ranging from body image and self esteem to sex, relationships and mental health. Author and disability rights advocate, Kelly Vincent, draws on her own experiences as an autistic and physically disabled person.
Jess Brien
Also, a quick side note, Debut Books is also really freaking cool. They are an independent Melbourne based publisher striving to build a platform to amplify great storytelling no matter who you are. They are specifically looking at the ways in which our stories are told, their website says that they want to create a safe space for all voices to be heard and shared, especially for emerging Australian authors.
Jess Brien
Their books celebrate all kinds of identities and all that makes us human. Their website also says this, which I think is so lovely. "Connection and community are at the heart of what we're trying to do. By creating an inclusive publishing process, we hope that you, dear reader, feel a part of something big, too."
Jess Brien
Now, I've never met Kelly, but I would absolutely love to one day. Kelly Vincent is an Australian-based writer and advocate. At age 20, she won the State Theatre's Young Guns Award for Young playwrights. And at age 21, she became Australia's youngest member of parliament and first ever appointed specifically on the platform of disability rights.
Jess Brien
From 2010 to 2018, Kelly represented the Dignity Party in the Upper House of South Australia's state Parliament, making vital changes to the way service providers, the built environment, and the justice system responded to the needs of disabled people.
Jess Brien
Yeah, I know. You can see why I would love to meet Kelly one day. Absolutely amazing. Since leaving Parliament, Kelly has worked as a neurodiversity and disability policy adviser to a couple of government departments, then as access and inclusion officer for the 2020 Adelaide Fringe season. And oh, my god, if you did not know already, Adelaide Fringe is probably one of my favourite festivals ever. And Kelly is also the project and policy officer for an LGBTIQA+ advocacy organisation.
Jess Brien
Then Kelly realised that she could combine her passions of accessibility and the arts. And in 2020, she co-founded True Ability, a disabled persons theatre company where she is creative director. As well as publishing DandeIion Heart, which we are going to chat about today. Welcome back to the podcast, the incredible Diana Devine.
Diana Devine
Thank you so much. I'm so excited to be back.
Jess Brien
I'm excited to have you on this episode because you are the one that introduced me to Dandelion Heart. So thank you. How did you find out about this book.
Diana Devine
So Kelly Vincent is a fairly prominent person in the disability community in Adelaide, as well as politically as well. So she's already a bit of an idol of mine. And I have been following her social media for a while. Also, someone I know via the arts industry in Adelaide posted their readings from this book. And I fell in love with a few of the passages and just pretty much knew I had to give it a go.
Jess Brien
I read it so quick as well. I just found that as soon as I opened it, I just couldn't stop.
Diana Devine
Yeah. I was planning on reading it, like over a couple of days on a holiday. We'd planned out this beautiful picnic in the sun for me to read my new book, and instead I just read it the night before because I wanted to just see what it was like. It was just the whole thing. I read it in 45 minutes I went through it and then I went back through it the next day, tossing it to Jackson. You've got to read this. You have to.
Jess Brien
I'm so excited because I read it this week and I'm already like, I want you to read it, I want you to read it, I want you to read it. It was just so good.
Diana Devine
Yeah. This book, this copy is getting worn out. It's going to be read so many times.
Jess Brien
I love that.
Diana Devine
And only 15 times.
Jess Brien
I know. So cheap, an absolute bargain. Now, a lot of people have listened to your interview that you had here on That's So Chronic and they've commented to me just on how lovely it was to hear from somebody who was navigating the feels around using mobility aids and how great it was to hear your experience of that.
Jess Brien
And it definitely... When I was thinking about those comments that people have said to me, it led me to thinking about identity. Right at the beginning of this book, the opening before we begin chapter, it did start off by talking about identity. I guess it was more of an acknowledgement over what language Kelly was going to use in the book moving forward.
Jess Brien
Kelly actually says a quote, "For me, I see my disability, including my autism, as central to my identity." I think that is really important to acknowledge just at the top of the book and also, I guess at the top of this chat, because I do think that sometimes people, especially non-disabled people, do think that there's one way of defining or labelling or talking about something. What do you think about that and how did that opening chapter, I guess, resonate for you?
Diana Devine
I mean, it sure would be easy for everyone else, if there was one identity that was going to work for every disabled person. But oh, my goodness, disabled in itself, that word is such a massive umbrella of all these different experiences and presentations and symptoms or just not even necessarily health related.
There are just so many facets of disability that mean so many different things. It's, frankly, ridiculous to expect to be able to summarize every single person with one turn of phrase. I'm a big fan of identity first language for myself. When I did my psychology degree and I was majoring in disability. I did... We were taught to do person-first language at the time. So I think that was around 2013-ish, 14.
Jess Brien
So for anyone listening person first would be like person with a disability. Yeah.
Diana Devine
Yeah. Whereas identity first is disabled person, which is what is generally more prominent nowadays. But, everyone has their own preferences, just like Kelly says in the book. Yeah, it absolutely varies person to person. And it's going to be informed by different experiences and different beliefs. And we all had different things happen to get us to our preferences and the way we like to function.
Yeah, absolutely. I'm a big identity first because I think I spent such a long time denying my identity as a disabled person and also as a queer person, I've done it twice already. I'm not going to keep doing it. Yeah. So I just -- I'm very embracing the disabled label.
Once again, as Kelly says, very central to my person. I think it also does this whole thing with joining the body and person, which I'm very big on. Instead of separating the body being like, oh, my is back being mean today. My brain is saying mean things to me it's like you're one person and you're working with yourself. And I find that identity first language inherently acknowledges that a little bit well. We're not just but not just bare people who have picked up packages.
Yeah. That's really interesting. I hadn't actually thought about it like that with, "Oh, my brain is doing this today," or, "Yeah, that's really cool."
Yeah. I mean, not to say that that's always a bad way of thinking. It's just also we do slip into it. And I find that sometimes in the wrong context or in a particular, I guess, emotional state as well, it can be more harmful than good to separate your body and act like you're battling your body rather than your body is trying to honour what it needs to do and you're trying to cope with that. And it's a relationship rather than, I don't know, enemies.
Jess Brien
Especially at the beginning of this book, Dandelion Heart, Kelly says a quote, and obviously I'm not going to be reading out too many quotes because I just think everyone needs to go and buy the book and read it for themselves.
But right at the beginning, Kelly says, "I was gripped by worry at the idea that some well-meaning person wanting to learn about disability might pick up this book and see it as some comprehensive go-to guide on the lived experiences of disabled people. Neither I nor any one person can provide this. That is simply because we are all different, because we are human."
I just love that because I think that also ties in so deeply to the reason why I want to share as many stories as possible on this podcast as well. When I was reading that...
Diana Devine
That passage was my first tear, definitely.
Jess Brien
Oh, I know.
Diana Devine
It was when I was like, oh, this is going to be good.
Jess Brien
And then I think I wrote down in my notes, I'm like, it's only Page Six and I'm already furiously writing down notes. What is happening.
Diana Devine
Yeah. That was just gorgeous.
Jess Brien
So good. And so then after we move through that beginning chapter, we get into the nitty gritty of it all. It's a selection of essays and poetry. I'm curious. What was your favourite chapter?
Diana Devine
My two favourites were, I think, going to be everyone's favorite. The opening before we begin, it just had such immediate impact. And just, I guess, perspective it was written from was just really easy to attach to for me. And it was just straight away like, I know what this book's going to be about and I am so here for it. And then the cycle of inaccessibility because...
Jess Brien
That was my favorite, too.
Diana Devine
I feel like every disabled person has this thought process. We all understand this concept without necessarily having a name for it or knowing there was a name. That was another one where I was crying because I agreed so hard. I also really did like Chapter, I guess, Two, the classic tale of boy meets girl. Which was just very confronting but also important, I think, especially as I was a disability support worker.
Seeing some of the practices that were described in that chapter is really saddening, but also not all that surprising. I've got a few, basically the whole thing. The poems, that the first poem also crying just right at the end. I'm not going to read it out, but the ending to that is just so nurturing and gentle and it feels like balm for the soul. It's so beautiful.
Jess Brien
That is such a great way of describing this book like balm for the Soul. There were definitely moments where it was quite shocking for me when I was reading it and also confronting. But then I also felt really held by the book as well and I felt even though I was reading it, I felt like someone was listening to me. It was just the most amazing experience.
Diana Devine
It felt like an exchange, almost.
Jess Brien
Yes, that's exactly. Yeah. And that doesn't happen every day for me when I'm reading books. So I don't know what Kelly Vincent has done with that pen to paper. But it is magic.
Diana Devine
Yeah, definitely.
Jess Brien
At the beginning of the cycle of an accessibility chapter, it was definitely already Jess Brien to a T because it was set in an airport. And I was just like, yes, I miss airports. I was on board from the opening sentence. But throughout that chapter, it really made me think and it really made me feel even more inspired to keep changing the world and just keep sharing stories and advocating.
Jess Brien
Everything is just messed up and I just really loved when it was like, the whole sentiment of, instead of getting inspired about this stuff, get fucking angry about it and actually, stand up and try and make a change. I just got really moved in that chapter. Definitely. That's interesting that it was also one of your favs.
Diana Devine
I feel it's going to stand out for every single chronically ill disabled person who reads this. It's just so... I feel there aren't many universal experiences for disabled people, but that sure is one of them.
Jess Brien
There was another moment when I was reading that I thought that so chronic listeners might resonate with or they might enjoy when they read the book as well. And that was, I can't remember exactly what chapter it was in, but it was when Kelly was talking about how sometimes when you don't have a diagnosis for something, life can feel like there's just this big question mark, hanging over you. How do you feel about that? Did you ever have a moment of this question mark hanging over you?
Diana Devine
I mean, roughly the first 24r years of my life, give or take, especially with, I mean, my personal history, which you can find out all about if you'd listen to the other episodes. But it was my personal history because I just spent so much time not even realizing I was actually disabled and realizing that my experiences weren't the common experience. It felt like it was describing me. In this context, I believe Kelly was talking about autism.
Jess Brien
That's right, yeah.
Diana Devine
But really, once again, it can apply to pretty much any diagnosis and that moment of, I guess, discovering that your experiences and that your troubles, your struggles to get through the world and everyone else is seemingly not having to fight so hard, that moment of like, "Oh, yeah, that's because this isn't accessible to you because you've got this need that we can now try to meet and things will suddenly get a lot easier. Which is for, whatever, even with curable illnesses, I think it has that moment of, we found it. We've got it. We know.
Jess Brien
Yes. Then that same thing of even when you have the diagnosis and then there's still possibly a question mark of what does this mean now?
Diana Devine
I think there's this huge discrepancy a lot of the time, by the time that we've learned how to manage and deal with our symptoms on our own and actually getting that diagnosis and the proper support to the stage that by the time we have that diagnosis, we are living life so differently to, I guess, the easiest way.
Because we've just found our way to function, it's not necessarily going to be our best and most comfortable way. It's just what we've learned. Then adjusting and consolidating those two facts of, I know how to function, but also this, new information sheds light and will help me function.
But then you've got to break those habits and just totally relearn your life, even though it sounds like it's a really great result, which obviously is going to be, a more free life. But it's confronting and difficult to actually make that change, which is, I think, something that was really at the core of how I struggled with mobility aids.
Jess Brien
And yeah, by reading this and having that image of a question mark just hanging over me, it just brought back all of those thoughts for me and it put me back in that spot where, all of this stuff was going on for me and there was no name for it.
People just couldn't understand what was happening or doctors didn't believe my symptoms. Then just that feeling of when I did get the diagnosis, the question mark went away and then it opened... I don't even know what, maybe a semicolon or something, commas. What is the word when it's the three dots, three [inaudible 00:17:48].
Diana Devine
Oh, ellipses.
Jess Brien
Ellipses?
Diana Devine
Yeah, ellipses.
Jess Brien
It felt like maybe those what [inaudible 00:17:52]. Also in that same chapter, Kelly talked about feeling as though she hadn't been given the rule book. Tatiana said that in her That's So Chronic episode about her diagnosis of ADHD and how she felt like she hadn't received a rule book or the Book of Adulting. I was just like, "Oh, my God, everything is connected." Even though it's not the same diagnosis, so many things are connected. Oh, it was amazing when I Read that.
Diana Devine
It's nice to hear those things. It's just so validating as well, because that means there would be so many listeners at the moment hearing those kinds of sentiments and being like, oh, thank goodness. That's me. It's not just me.
Jess Brien
Had you read much poetry before?
Diana Devine
As a child, I was massive poetry nerd.
Jess Brien
Were you?
Diana Devine
When I was five, my favorite author was Edgar Allan Poe.
Jess Brien
Oh, my God. I love this information.
Diana Devine
Yeah, I was such a little Goth nerd as a child. Not in my aesthetic, just in my total personality. But I used to carry around this big book of poems. I'll try to get Jackson to grab it if he walks past. It's like this juggy book of poems and I've still got it and it's only a little square, but it was something like 300 pages. I'd done these sticky notes.
[inaudible 00:19:14] through the sides, I'd circled my favourite passages, written notes about it. I don't know why I went slightly away from poetry a little bit more. But yeah, as a kid, I was like, I will be growing up to be a poet. I will be a poet.
Jess Brien
Wow. So this book is definitely right up your alley.
Diana Devine
Oh, yeah, absolutely. It actually reminded me a lot of Rachel Bloom's autobiography. It just touched on a lot of similar things, although she doesn't talk specifically too much about illness and health. Just the way it's formatted and the flow of... It is a bit of a narrative flow between the chapters. I really like that style of a collection of smaller pieces to make a larger hole. Can you tell I like Cabaret?
Jess Brien
Yes. I was thinking about that when I was reading it because I'm not super familiar with poetry. It's not something that I would just pick up and read a book of poems. So I was a little bit nervous when I started reading, "Oh, no, am I going to understand? What's it going to be like?"
But yeah, because it is a collection of poems, but also short essays and personal essays as well, if you're listening and you're thinking, oh, no, I don't do poems, I definitely still recommend reading because although there might have been times where I was like, oh, I need to read that poem again because maybe it didn't quite go in because I'm not used to reading poetry. It was still really incredible. I think maybe I might be a poem convert now. I was reading it thinking, maybe I should read some more poems.
Diana Devine
That's awesome. Poems are such a gorgeous art form. I love them. I also unsurprisingly, as a child was really into, rap and hip hop, the exact same thing of the flow and pacing. And then just all of the word play and poetry, my God. I love that.
Jess Brien
So.
Diana Devine
Clever. And it's all really good poetry. It's not just like and this bit's a poem that talks about this. It's really impactful. I don't know, I find poetry so calming no matter what they're talking about having that rhythm to sit into. It's very soothing. And the whole book is soothing.
Jess Brien
Have you ever met Kelly Vincent?
Diana Devine
Not one-on-one, but during my degree, Kelly was in a member of Parliament, I believe at the time. And so, yeah, we got to have a little lecture from Kelly, which is pretty cool. I believe it was part of the health sciences part of my degree rather than disability, which was also great because I do worry sometimes when disabled people are only used in disabled contexts.
It can be a little concerning and I guess upsetting to be like, "Oh, yeah, you're disabled. You can go teach the disabled class." Because we got a little bit more to your person than that. I believe it was health sciences and it was talking about in our augmentive and alternative communication class. Then she also came through and did another talk in an advocacy class, which was a very good class as well.
Jess Brien
Oh, my goodness. I really want to meet her one day.
Diana Devine
Apparently also, she came to one of my Just Us League shows once. I didn't see her because I was backstage busy producing. But I just found this out at my friend's party last week. My friend was like, "Kelly Vincent came to your show very early on."
Jess Brien
I love it. Claimed your fame. I love it. I love it so much.
The book ends on a really powerful message, a letter to herself. And I'm wondering, how did you feel when you got to the end of the book?
Diana Devine
From what I could read through the tears. Let me get to the final page so I can think about this. It's just... I think it's once again the same sentiment that so many disabled and chronically ill people would sit with and really identify with of... It's going to be hard. If you can make it easier, that would be great. But don't be too hard on yourself. Just love yourself. Just sit with yourself as you are.
I feel that's essentially what all I'd need to say to my past self. Once again, so nurturing the whole thing just feels very nurturing to yourself. It's the author is nurturing themselves. I am nurturing myself by reading it. We are nurturing each other and the people listening by talking about it. Just feels like it's such a spreader of joy and calm.
Jess Brien
I wrote down, "I feel so seen," -
Diana Devine
Yes.
Jess Brien
- by the time I got to the end.
Diana Devine
Very important book.
Jess Brien
Yeah, I'm definitely going to have to read it again and again. It feels like one of those books that you need to just have in your house on your coffee table or something that people can just pick up and you can just read one of the chapters. It's so brilliant.
Diana Devine
Absolutely.
Jess Brien
If you had to summarise the book in a sentence or perhaps use three words, how would you describe Dandelion Heart by Kelly Vincent?
Diana Devine
It's hard, isn't it? Because it's just so much to say. There's so much to say about it. Soothing, necessary, and revolutionary.
Jess Brien
Yes.
Diana Devine
Absolutely gorgeous. It is such an easy and quick read as well. It has all of this impact over, I think, 90 pages or something.
Jess Brien
Yeah. And it's not too overwhelming.
Diana Devine
No.
Jess Brien
Your brain doesn't get overloaded and you're like, "Oh my God, I need a cup of tea because that was too much to take in." It's really digestible.
Diana Devine
Yeah. I read this before bed and had the best sleep.
Jess Brien
Yes.
Diana Devine
It's great. It really is just so especially for disabled people, I think is going to be so comforting. And yeah, it's like a big, warm hug. Just love it.
Jess Brien
I love that. And we love you here at That's So Chronic. Thank you so much-
Diana Devine
Thank you for having me.
Jess Brien
-for chatting with me today about Dandelion Hear. If you're listening, wherever you may be listening from, we definitely recommend that you go and have a read for yourself.
Diana Devine
Oh, yeah.
Jess Brien
I bought and read this book on Kindle and all of the links will be in the show notes for easy access. This episode was in no way sponsored, but if you would like to support an episode or you have something that you would like featured on an upcoming That's So episode, feel free to reach out.
Jess Brien
As always, I love connecting with you all over on Instagram. I'm @thatsochronic. If you enjoyed this episode, don't forget to Press Subscribe on Apple podcasts, follow on Spotify and leave a review. That helps That's So Chronic get into more ears around the world to hopefully spread awareness and more importantly, hope. It also makes my heart really, really happy. So thank you so much.
