AXSChat Podcast

Creating Inclusive Narratives: A Discussion with Author Carol Van Den Hende

October 23, 2023 Antonio Santos, Debra Ruh, Neil Milliken talk with Carol Van Den Hende
AXSChat Podcast
Creating Inclusive Narratives: A Discussion with Author Carol Van Den Hende
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What does it take to write a story that not only grips its readers but also sparks empathy and resilience? Join us as we unravel this mystery with the talented author and speaker, Carol Van Den Hende. Carol's Goodbye Orchid series has woven these themes into a compelling tale shaped by her personal experiences raising a son with special needs. She shares the transformative journeys of Orchid Page, living with PTSD, and Phoenix Walker, recuperating from a life-changing accident, reminding us of the power of literature as a mirror of humanity's struggles and triumphs.

We also take a fascinating detour into the realm of science and technology, as presented in Carol's series. Hear about the intricate details of Phoenix's varying prosthetic needs, and Carol's poignant perspective on how the lack of insurance coverage for expensive prosthetics can be a socio-economic barrier. We discuss why it's crucial to mainstream assistive tech for a more inclusive society. Additionally, we touch upon a critical topic - how empathy and prejudice are shaped during childhood, and the role adults play in molding these attitudes. Concluding with Carol's valuable insights about writing, diverse representation, and her drive to inspire hope through her work, this episode is a treasure trove of emotional intelligence, technological innovation, and the power of storytelling.

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AXSCHAT Carol Van DenHende

NEIL:

Hello and welcome to Axschat. I'm delighted that we are joined today by Carol Van Den Hende, and also corporate warrior. But we are not here to talk about the corporate warrior bit today. So, Carol, you're the author of the Goodbye Orchid series of books. Can you tell us a little bit more about your writing and the motivation behind it?

CAROL:

Absolutely. So, sometimes I say, the short answer to what inspired me to write the Goodbye Orchid series is the fact that one of my twins started to have problems and we realised that he had special needs. And during that time, as we were going on that journey to find ways to support my son with special needs, I was inspired by stories in the news of combat wounded veterans, coming back and really what it was, it was the strength and resilience that those veterans demonstrated to get back to good that gave me hope in our future for our son and started me writing. So, that created this passion for exploring and I thought I was writing for myself initially, when I was pouring my heart out on the page and it turned out, as I joined groups of writers and shared my work and there was one instance in particular, in which I was able to, as I was sharing a portion of the story, in which the main character faces a life changing accident. I brought this table of writers to tears. And it made me realise that perhaps this work had the power to touch others as well. And so, that's what started me on this journey.

NEIL:

Great. I had a meeting recently where I was on with a colleague and a client and I got the message, afterwards, good job, you made her cry and it was like, not in a bad way. Right, I think it was you know, like, I feel like you understand but, yes absolutely that emotional connection is really important. So, yes. So, fantastic. So, tell us a little bit more about the sort of the series and obviously, you have got multiple books now, I see several behind you.

CAROL:

Yes, so the series is now a trilogy. In fact, the third in the trilogy will come out next week. And each of them has, you know, a theme in it that is very relevant for our conversation today. So, in book one, which is Orchid Blooming, readers will meet main character Orchid Paige. She is like half Asin, just like, my twins are half Asian and as a child, she did, you know, kind of have tragedy. So, she had lost her parents at a young age and she even witnessed their death, which resulted in her having PTSD. Now, as an adult, she is actually a strong resilient woman, with a carer and now what she wants more than anything is to win a work trip to China, to feel closer to the memory of her mother. But that PTSD, does you know, become a challenge along the way and the beauty of Orchid blooming is really showing the ways in which she seeks mental health support. The way in which she gets that and really finds a way to her best life. Now, along that way because of her challenges, actually her boss says that trip to China she wants to win, she needs more advertising experience. So, along the way, she meets the handsome head of an ad agency, successful Phoenix Walker and in Book Two, which is Goodbye Orchid, what happens, right in chapter one, is that an accident befalls Phoenix. He actually is in the subway station in New York. He sees a homeless gentlemen, who is at his wits end and is about to throw himself from the tracks in front of a train, that's entering the station. Phoenix is a big-hearted generous person. He grabs the homeless man, pulls him back from the edge and saves his life but ends up on the tracks himself and as a result, he sustains injuries that will change his life forever. Which we can talk about in a moment. But that, you know, so when I say the books are inspired by combated wounded veterans, even though the characters are not combat wounded veterans, they go through an experience like that, between the PTSD that Orchid has and then Phoenix, because of his life changing injuries, actually goes through a journey of grief, denial, bargaining, acceptance and ultimately finding that life can be more than whole, no matter what he thinks he might be missing in Goodbye Orchid. And it's a beautiful story, in which Springboard Consulting actually named me disability hero of the year for the work in Goodbye Orchid. And multiple Purple Heart decorated veterans have endorsed the series for that depiction of what Phoenix goes through and his, not only his physical recovery, but his emotional recovery as well.

NEIL:

Debra, you're muted.

DEBRA:

Thank you, Neil. Carol, welcome to the programme. I've been blessed to also interview you on my other programme and I really like how you bring your characters to life. I think that's a real gift certainly any author can do but, why do you think Carol it's so important that we really, that authors really explore these topics from all the diverse ways that you do it from really digging into the lens of you know, what it means to be truly human. Why do you think that is so important for authors to really bring out. I know that sometimes authors are criticised for, I saw one author criticise, I thought it was honestly unfair criticism but you know, you can't stop social media but she was being criticised because people were saying that she was doing too much inspirational porn and that her story was too inspiring, which is interesting because we want to inspire each other, we certainly don't do want to do inspirational porn, but it feels like it's sometimes a tough line to walk when you are really building up your characters, to make them look like, you know, human beings.

CAROL:

Yes. I mean those are two great questions in there, Debra and the first one about, you know, why write, you know, because I have a full-time job, I have twins I'm busy. So, for me to find time for writing, it means it is incredibly meaningful and important to me. And, I had to ask myself my inspiring purpose question, you know, what is the reason for me to write you know, beyond the obvious profit and functional purposes and the answer that came to me was, really I have a mission to inspire hope and empathy for people and planet and the writing is such a big part of doing that. Writing has actually been shown to deepen empathy. And fiction, in particular because you do get to walk in someone else's shoes, you get to see the world through someone else's eyes and readers have told me either they have been through medical challenges or trauma or disability and they feel so seen on the pages of the Goodbye Orchid series or readers also tell me never that they have never had that personal experience and perhaps they don't even know someone who has, but seeing that experience through Phoenix's eyes, through Orchid's eyes, deepens their empathy for those experiences. And so, that is the why that is so motivating to me to be able to deepen empathy.

DEBRA:

Right. That's needed more than ever right now, isn't it?

CAROL:

It sure is. It would be lovely to have more than of that the world. And then, the second question you are asking about, you know, what are the ways to navigate that difficult space between having a lived experience and if you don't have the lived experience, you know for me because of my respect for the wounded veterans, for the people with disabilities that did inspire me to start writing the series, I did so much research to ensure that I was getting you know, not only the details of recovery right. But also, the emotional nuances and of course, not everyone's experience is the same and everyone is having an individual experience. So, there is no way to be able to say that you can universally represent that. And I completely and humbly say that for sure there is no, that's not universal representation. But in addition to the research for me, is really important to have great sensitivity readers. So, people who have had the lived experience that I depict in the books and that they were able to really help guide and shape and you know, give me pointers to be able to achieve the level of authenticity that you know, I see in the reviews that come back, in the endorsements that come back from wounded veterans and people with disabilities. Those touch me tremendously because I really only want to do this work if it can do good in the world. And so, to hear that kind of feedback is tremendous. Now, you talked about this idea, can something be too inspiring and it reminded me, I think one of the, actually one the earliest people I worked with the on the series is Sergeant Brian Anderson. He had fought in the Iraq world. He actually shipped out from the US on 9/11 and he served multiple tours of duty. On his last tour of duty in 2005, he was injured in an ID or improvised explosive device explosion. As a result, he instantaneously, the ID instantaneously took both of his legs and his left hand. And so, in that moment, he actually thought to himself, life will not be the same again. And he's been such a big help for me in the series. And one of the things he said was, I, you know, because people will go up to him and say to him, oh you're so inspiring because he's out grocery shopping or putting gas in his car or whatever. And I took this to heart so much when he said, listen I'm not here to inspire other people. I'm just living the best life I can, just like any of us. And I think that is so true and so for me, thank you Debra for saying that I have this gift of being able to depict the characters. For me, I get very deeply into the characters and I strive to you know, see the world through their eyes, so, seeing the world through Phoenix's eyes after he lands on that train track and wakes in the hospital to find, spoiler alert, that the train has taken his arm and his leg. And so, you know, kind of walking in that, through that lens, seeing things through that lens and really having Brian's words of wisdom in my mind, helped keep me you know, on the path as right and true as I could strive to achieve.

ANTONIO:

Carol, I was about to ask you about how you prepare your books about the research that you are doing in order to come up with the characters and you already answer to that, almost in full, but I would like to ask, you know, in this space of supporting veterans and supporting people with disabilities, there is also a world of science, of research up there, that is helping to improve the lives of people. How do you look into advice in science and in technology and bring that to your books as also sometimes a way of showing people some of the possibilities that they have, in order to improve their lives.

DEBRA:

Yes. And that makes so much sense hearing that question from you because I know that there is so much technological expertise on this call today. And so, that's an exciting question. You know the research takes form in many ways and there is a lot of information on the Internet around the technological advancement in prosthetic devices or adaptive devices to help. So, the way that that shows up in my story telling. First, there is absolutely the, you know use of technology that is appropriate. So, Phoenix has prosthetic devices but also I show how they can differ, depending on what his needs are. So, he used to compete in triathlons and really wants to be a triathlete again. And so, for him to start running again, he needs a running blade and he talks about how the running blade is a little bit longer and he can walk with it also because it has the extra little heal adaptive piece in the back to be able to, so he can walk as well. But he has to be a little more careful. He has to look for twigs and whatever on the sidewalk as he's getting to his running path. So, for instance, that level of detail or sharing then, when he comes back from his run, how he takes off the prosthetic device, how he handles his silicon liner and how he you know, maybe can change the amount of socks that he is wearing during the day, depending on whether his limb is you know, shrinking or swelling. Those are little details that people aren't that aware of and then when they see the amount of thought that needs to go into it, needing to and you know, maybe carry a torque wrench with you so you can little adjustments during the day. Those types of things, you realise, you know, because sometimes people who don't have that depth of experience might oversimplify and say, well you know, you lose a leg, well, just wear a prosthetics leg. It's not that simple. You know, and the types of issues that can happen with the skin breaking down or you know, all the little nuances are ones that I strive to depict with great authenticity. I would add maybe two more points. One is, in the story line, Phoenix talks about how it isn't fair that insurance might not cover all of the extra types of prosthetic devices that they might consider luxury items. You know, so, yes they will cover a prosthetics leg, but they might not cover the sports leg or you know, the speciality ones and they are very expensive. So, the fund raising that helps people with prosthesis, I think is amazing, Heather Abbot Foundation, donates to people who you know, insurance isn't covering those and I think that's really wonderful. And I will just share one more because I think it's such an interesting area that you're bringing up, the other part of the storyline is Orchid works in the beauty industry and as she gets to know, what Phoenix is going through, it inspires her to create a line of skincare products that instead of you know, burn creams and scar creams and amputee balm, that is packaged very medicinally and considered a very functional product, she elevates it to the level of luxury. In order to say, you know what, these products are part of people's everyday lives and are as important to be luxury items, as anything and that deserves that and that that sends a message as well. And that's a beautiful culminating way in which, the third book, that I didn't talk about yet, really helps with disability awareness and disability advocacy?

NEIL:

Excellent. I really like the points you're making. So, there are a couple of things I wanted to touch on, definitely the point you made about insurance not covering everything is a real issue. It's pretty short sighted but it's not entirely surprising but people look at things in a sort of, you know, what a few inches in front of their nose sometimes. I am not talking about people so much as organisations, so, whilst they may think, whilst you've got your prosthetic, you don't need the running one, that's a luxury, actually as an insurer, if people don't stay fit, you're going to be paying out, because they are going require other disabilities, maybe you know, it's obesity related conditions that cost more money again. So, I think there is a growing recognition amongst some medical practitioners that there needs to be more sort of preventative medicine and societal care but I think that that's a mindset shift that hasn't in anyway completed yet, I think we are on a beginning of a journey, so, I think it's great that you're highlighting that. And then, I think the other bit, the making stuff desirable is extremely important. You know, why should kit for people with disabilities always look like it's something horrible from you know, the hospital you know, when you know, it's something you're using in everyday life and particularly, we have seen how transformative it's been with the mainstreaming of assistive tech, in technology, where a lot of, for example, if someone needed AAC, before you would pay many thousands of pounds or dollars, for a device where you had be able to use text to speech, it would be made like it was a Fisher Price toy, designed for kids, infantilising people because they can't speak. And now, you can have an iPad, which is a desirable consumer device and buy it for a fraction of the cost and download a piece of software that works for you. So, that then brings accessibility and inclusion into the mainstream and makes it something that you know, people have a desirable product, is you know something that they value that doesn't bother them and make them stand out when they are already standing out, quite often because of their difference. So, I think that that process of inclusion, and you thinking that about that is really important.

CAROL:

Wonderful point and actually, I think so much of the innovations that have come about to help people with disabilities, actually benefit society as a whole, as a whole and so, we should really celebrate that as well?

NEIL:

Yes. Absolutely, so you know, that's known as the curb cut effect. You know, it's those extra benefits that you get that you know, design for the edges, make it better for the middle. So, your books, all three of them, well two of them published, I am assuming available on all of the good places that you might get your books and consume your content, in physical and digital form?

CAROL:

Correct. So, they are available as you know, so there is paperback here. There is audio book. There is E book and there is hard cover. The hard covers are really gorgeous, I don't know if you can see, here, I'll just show you one, so for instance, the always Orchid cover, actually underneath the jacket is the beautiful cover printed again. So, they are really meant to be immersive experiences. You know, not just in terms of the words and the storytelling but also the beauty of the design. It's really meant to create an experience; in fact, the orchids are even the bottom right corner of every page. And they will blossom or shatter until you get to the depth of the story and then visually come back together. A lot of thought and love are put into these books.

DEBRA:

They are beautiful.

Antonio:

I have to ask you, why Orchids?

CAROL:

So, yes that's a great question. The main character is Orchid and it's quite meaningful. Both Phoenix's name and Orchid's name are very meaningful, specifically chosen for the journey that they go on. So, Phoenix, I think, might be a bit more evident, given that Phoenixes in mythology need to rise from ashes and after Phoenix's accident, he certainly does rise from ashes. You know, it's very realistic, the troubles he goes through and the challenges he goes through. But, in the end, it's ultimately a very optimistic outcome. Orchid's, name has meaning because orchids have is a reputation for being delicate and what happens in the storyline is Pheonix, when he wakes in the hospital, after his life changing hospital, he's thinking about Orchid and he's longing for her but he remembers that that tragedy as a child, witnessing the death of her parents, means that she is sensitive to images of trauma. And so, he feels he's faced with the hardest decision of his life, in order to care for her, he might need to leave her without explaining why. Which is why the second book is called, 'Goodbye Orchid.' Now, her name is important because he has this view of Orchid's being delicate and wanting to protect her from his life changing accident and this is something that can happen in real life too. We can talk about that in a moment. But what is lovely is, if you talk to orchidologists, people who study orchids and grow orchids, they say that orchids in the wild are quite resilient. They will grow on the barks of trees in the rain forest, they will grow in the air without soil. And that is this character, Orchid. While on the surface because of what happened as a child, perhaps she might seem like she might be delicate but actually she is quite strong and resilient. And I think that's a beautiful analogy for people with visible disabilities. Perhaps you know, others look and think, that's somebody who is weak but that is not the case. I think so much of you know, the messages I hear from the sensitivity readers I've worked with is, listen maybe something terrible happened to me at one point. But I've come to see that might not be such a terrible thing. That it has taught me so much in life and that I can live a very full and very wonderful life and I hear that message again and again. And I think that's a beautiful message to share. So, thank you for asking.

DEBRA:

And I love that answer. And I grow orchids. And I was always told that you can't, that they are very difficult to grow but I actually find they are not true, they are very hardy. You just have to follow; you just have to listen to the flower. If you listen to the flower, they are really beautiful. I love orchids so much. But I also wanted to state is that we are all going to go through something and probably many somethings as we live our lives. It's just part of being a human being. And so, you know, I think what I love about your books and other books like yours is that it reminds us that it's okay to be human and it's okay to have empathy for each other and we all are different, we all look different sometimes. We are all, I get people looking at me all the time because I have purple hair. It's not normal. But I don't care. I like being a little different. It's a nod to the beautiful orchids. But I just think it's important to consume books like yours and others because we need to really understand the lived experiences of human beings and we have decided, as society, that people with disabilities are broken, which is not true. People with disabilities are human. And by the way we are all part of that tribe. We are all human and we all are diverse and sometimes we have disabilities and sometimes we don't. So, I think taking a step back and really appreciating our identities is very important and that's one thing I loved about your books and why I had featured you on my other show and suggested you as a guest here because, we do need to explore the fiction and the characters and really understand people's lived experiences, especially at a time, once again where things are so intense and so scary right now, in our world. So, I just wanted to you know, also bring up those things and that's another reason why I appreciate what you're doing.

CAROL:

Those are beautiful words, thank you so much. It means a lot to me, coming from you, Debra.

DEBRA:

Thank you Carol. Back to you, Neil.

NEIL:

I was struggling with the mute button. Sorry, it's always terrible when you do that, only been using computers for decades. But still failing at the most basic of things. And I think that's the thing. We are all human. We all do have moments and so, taking it back to your own experiences and you know, as the parent of a child that has special needs, as you described it, how has that you know, that advocacy work, through your writing impacted on how you then live your life, as a parent, caring and advocating for your child. Has it had a positive impact?

CAROL:

Yes, you know, so I feel like it definitely, it has had an impact and one of the ways in which I think you're asking me how has to come to life. One of the ways was that it inspired me to actually volunteer on a board of directors, for a school for kids with autism. So, I served on that board for six years and it's tremendous to see the work that is being done to try and reach children at an early age where the therapies can really make a difference and to see the, you know, how those lives are benefited from the right you know, approaches, from the right therapies. It's just tremendous. So, I feel so fortunate to have been a part of that. I also found that going through the experience as a parent, reminded me of experiences I had a younger age and probably the ideas around disability advocacy came from earlier times, although I hadn't thought about them in a while, until we started helping my son. For instance, I actually dedicate the third book, Always Orchid to Richard. Richard is a person I had met when I was a child, in our community who we met actually at a soda machine and he would communicate with us by gesturing. He didn't speak to us. And I realised after he pointed at the baseball cap he was wearing and pointed at his name, Richard that he probably couldn't speak, perhaps he couldn't hear, maybe he's reading our lips but even despite all of that and perhaps because I was a child, you know you are so openminded at that age, I just communicated with him. It didn't bother me that we didn't actually speak. And so, myself and my friends invited him to play kickball with us, even though he was a bit older than us. He was okay. And he played kick ball and he just, you could see so much joy when he was just invited to participate with us and to be friends with us. It was such a pure like you know, through that very innocent child's eyes, it was just such a pure way to connect with another human being and so much of the theme we are talking about today has been around empathy. And I think that those seeds of empathy came at a very early age.

NEIL:

Excellent. Thank you. And yes, as children we don't judge. I think it's adults that teach children to judge and we ought to actually you know, learn from our children that lack of prejudice. So, I need to thank our friends, Amazon and My Cleartext for you know, keeping us On Air and keeping us captioned and accessible. And thank you, also Carol, for your time and your inputs today. It has been really lovely to learn about your work and the series and the motivation behind it. So, thank you, very much. And we look forward to having a discussion on social.

CAROL:

Thanks so much.

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