Plains FM Interview 14/08
On the 14th of August 2018, Victoria Dreyer of Cheeky Kea went on Plains FM's Lighthouse of Hope with Michael Hempseed, to have a chat about what it's like to live with disabilities and about our plans for the future. You can listen to the interview below, or click here to learn more about the show!
A special thank you to Glenys Dreyer for taking the time to transcribe the interview below for us!
[Voice-Over] "This program was first broadcast on Canterbury’s Community Access Radio Station Plains FM 86.9 and was made with the assistance of New Zealand on Air. This show has one mission – to give hope, where hope is lost or fading fast. We’re here for anyone affected by mental illness: their friends, their families, their employers, teachers, and anyone else in the community."
[Host] "Welcome to Lighthouse of Hope. I’m your host, Michael Hempseed and I’m so glad you’re joining us today. On today’s show we have New Zealand author Victoria Dreyer. Welcome to the show Victoria. So great to have you."
[Vic] "Hi. Thanks for having me."
[Host] "Great to have you on the show. So, you’ve written several books. Can you tell us a little about those please?"
[Vic] "Sure can. I’m best known for my post-apocalyptic survival series – The Survivors – it’s set in New Zealand ten years after a viral apocalypse and follows the tale of a group of people trying to rebuild civilization in the wake of a disaster… Sort of a kiwi take on the popular zombie apocalypse theme with less running and shooting and more people mucking in to get stuff done."
[Host] "Fantastic, sounds like a great premise."
[Vic] "Thank you."
[Host] "And, can you tell us why do you write, what’s the attraction with that?"
[Vic] "Mostly just because I love to write. I’ve wanted to be an author since I was wee lassie at my ma’s knee. I wrote my first book at the age of fourteen and it was terrible, of course, but it shows how much I wanted to write. But as I grew up I was constantly bombarded the idea that art careers are not real careers and that I needed to get a real job, umm, or my life would just never go anywhere. So, I tried to. The problem is, I’m not ashamed to admit it, but I am disabled, and I’ve had a bad run of luck. I was sick a lot when I was a kid and also when I was growing up, and I went through some pretty nasty domestic abuse, as well. As a result, I’ve got a ton of mental health issues, like depression and anxiety, some neurological issues and physical issues. Ahh, I had a fall in 2007 which damaged my spine, and while I can stand and walk a little, it’s not for long. Umm 2010, things took a turn for the worse. I developed a condition called Meniere’s disease. Meniere’s manifests differently in every person. For me, it’s like a killer ear infection – spinning, rotational vertigo, I’ve lost my hearing in the deep tones, and I’ve gained a hypersensitivity to high pitch noises. So, when I’m trying to talk to a person with a deep voice, I can’t really understand what they’re saying. If there’s a nearby ringing telephone or crying baby, its agony and I was working in a call centre which was totally fun as you can imagine. I refused to let my doctor put me off work until I just couldn’t stand it anymore. I was twenty, what, twenty-six, I think. Had my whole life ahead of me, and what can you do with your life. I mean, you can’t really hear anything. Can’t really stand. Writing saved my life, both literally and figuratively, and gave me a reason to get out of bed in the morning, gives me confidence, gives me a sense of self-worth. Doesn’t pay the bills just yet, but it will, and it led me to the other important thing in my life – the Cheeky-Kea Charitable Trust."
[Host] "Fantastic, so even though you’ve been through so much, umm, but your still giving life such an amazing go.
[Vic] "Well, you’ve gotta. It’s either that, or lay down and die, and I’m not going to do that."
[Host] "Yes. Please tell us about the Charitable Trust that you’ve set up.
[Vic] "Gladly. The Cheeky-Kea Charitable Trust is a non-profit social enterprise, dedicated to helping the disadvantaged and disabled attain financial freedom, through self-driven and self-managed career opportunities, like self-employment, freelancing, that kind of thing. We help those who don’t fit into the box to find their own place in the world. Modern society and technology has presented us with a unique set of opportunities that we’ve never had before, and people like me, no long have to feel like a burden on society. For some of us, our bodies may not work properly, but our minds do. Our minds may not work properly, but our bodies do. Or neither work properly but we still want to be a useful member of society. The goal of the Trust is to help people leverage the opportunities that are out there to their advantage, so that those of us who fall through the cracks, can still live a full and rewarding life."
[Host] "Fantastic. And you mentioned some people that maybe don’t fit into the box. Could you have us a couple of examples of what those people would be like?
[Vic] "Yes. Absolutely, I’m one of them obviously. The other one – though the one that really inspired me is my mum. I’ll tell you my mum’s story if you like, everyone knows my mum’s story. Umm, my mum is an amazing human being and I love her to bits, but she’s been through some real bad stuff and it has done damage. I won’t go into the details because it’s very, very personal, but the long story is that, ah, the short story is rather, that she can’t work a full time anymore because of all the stress that she’s been through. She can’t work in enclosed spaces with men, no offence intended of course, she has some physical disabilities, including hearing impairment, stand up, a few other things, but she wants to work, and she’s a wonderful, reliable, hardworking employee that any employer would be lucky to have. Umm for twelve years my mother was working as a research assistant for a sole-trader. It was perfect for both of them. She worked from home, so there were no office overheads for her boss, and she couldn’t, could work her own hours in her own space, so it fitted in perfectly with her limitations. In 2016 her boss had a stroke. The first thing she knew was when her boss’s daughter rang her to tell her they didn’t know if he’d survive, let alone whether he’d walk, talk, or run a business again. They had no idea what they were doing. So, they were just shutting the business down. Just like that, overnight, my mum lost her job, her best friend, and the only reference left on her CV. She was 57. She’d been working hard all her life and now society had no place for her anymore. For a year I watched her working, umm I watched her applying for job after job, and only getting silence in response. It was really, really, heartbreaking. She wanted to work so badly, but because of her unique combination of social, socioeconomic problems and disabilities, nobody would take her on. I had been, after about a year ago I had a brilliant idea. I’d been writing for quite a while then and despite my best efforts, mum was not interested in writing as well… so I suggested why not become an editor. She loved the idea. I got her into school, we ran a kick-starter to fund her study costs, and we got her enrolled in a training course. Now she’s interning with a publishing company, and she’s happy again. She’s not getting paid much, but she’s happy and that’s the important thing. And eventually, it will be a full-time job for her, and it is an opportunity that she can do, even with her limitations."
[Host] "That’s amazing, and I think there’s so many people in society that feel like they don’t fit or there’s no place for them, and it sounds like you’re doing some amazing work there trying to give these people opportunities."
[Vic] "Oh, absolutely."
[Host] "So, you’ve set up this charitable trust – what were some of the challenges doing that?"
[Vic] "Oh… a lot of learning, a lot of learning. Very intimidating to start with. Umm, I think the hardest part for me was coming to terms with the fact that I can do this. My goal in life has always been to just make art, and to help as many people as I can along the way. But the actual technical side of things – there’s no manual for this, its taken a lot of learning. It’s been ten months since I first started the project and we’re only just starting to get things to come together. Just sitting here talking to people, watching webinars, doing paperwork, reading things, asking questions, and honestly, a fair bit of crying and frustration – but if I could help just one person live a better life… then it’s all worthwhile."
[Host] "And I really appreciate your honesty with this, because sometimes it seems like these things are quite easy to set up but actually, there’s a lot more challenges."
[Vic] "No way! its been super-hard, but it’s worth it."
[Host] "Great. You mentioned just a little bit about your disability before, but can you tell us about some of the other challenges you might have with that."
[Vic] "Yeah, the biggest one is the social stigma attached to both my disabilities and me as a person. Though the hardest one is probably the… well, there’s two that are the hardest. Meniere’s disease is an invisible illness, which means it’s literally inside my head and no one else can see what’s going on. People can’t tell when I’m having an attack, they think everything’s normal, and it’s an ordinary day, while I’m sitting there trying not to throw up because the world’s been spinning for ten days. In fact, it’s like constant sea-sickness and people can’t see it, unless they notice you’ve turned a bit green, in which case they twig that something’s off, but because it’s inside my head, people sort of, don’t really understand what I’m going through. The other major problem I’ve experienced, is, I’m going to be brutally honest her and it’s not nice, it’s not good, but it’s to do with my weight and the associated fat phobia that is currently rampant in our society. I have a condition called polycystic ovarian syndrome, which makes it super hard to lose weight amongst other problems. It’s actually really common but we don’t talk about it in society because it’s one of those lady problems, so I’ve been trying to talk about it more to try and normalize it a bit. A lot of people have this condition and it sucks. But, it is just one of the many natural flaws the human body can develop – so we shouldn’t have to be embarrassed about it. The challenge we have to that is completely social, well, aside from being gigantic and not fitting in airline seats, umm but umm, I’ve been 180 kilos or so since I was twelve, and I’m almost six-foot-tall, so I’m like this gigantic terrifying Amazon. Society does not know what to do with me, I get a lot of looks, I get a lot of verbal abuse, so I get a lot of pointing and laughing, and honestly, it’s not very nice. So those are probably the two biggest challenges I’ve had to face."
[Host] "So, what would you like people to know about you, rather than the way you look on the outside, when you meet people the first time. What do you want them to know?"
[Vic] "I want them to know that I have a brain, and that I’m good for things beyond just what my physical body is capable of. I want them to know that I’m a good person, I’m kind, and I am doing the best that I can in a shoddy situation."
[Host] "Can the Charitable Trust that you’ve set up, one of your goals will also be to help people that might experience things like this?"
[Vic] "Yes, that’s one."
[Host] "That’s incredible. Writing a book - you’ve written several books - but even writing one book is a major accomplishment isn’t it?"
[Vic] "Well, thank you. I think anyone can do it, it’s the hard part is sticking with it to the end. Ok, it’s easy to start them but finishing them is a whole different kettle of fish."
[Host] "I read somewhere on the internet that 93% of the people that start a book, don’t finish it."
[Vic] "Sounds about right. I have about seven or eight manuscripts I haven’t finished at the moment."
[Host] "And you mentioned to me, in a conversation before that there are a lot of difficulties sometimes with people with disabilities to do what seems like oftentimes simple tasks. Can you tell us about that please?"
[Vic] "Yeah, it can even be something simple like getting up and going to work in the morning can be very, very hard, for people who have like say, chronic fatigue, or if you’ve got mental illness, for example, mental illness is a really hard one to deal with because people look at you and think – “Oh, just smile, you’ll be happier.” Or, “Oh, you’ve got anxiety, calm down, it’ll be fine.” But they forget that mental illness is a real illness and it’s not something you can just brush under the rug and forget about. You can’t just heal depression, spontaneously through sheer force of will, like, and… if you suggested to someone that “oh, your broken leg isn’t real, just imagine it better, it’ll be fine.” It’s ridiculous, but people still kind of think mental illness isn’t real and I really hope that changes."
[Host] "Mmm, I think it is slowly starting to change, but there’s still a few more people that need to understand this a bit better."
[Vic] "Yeah, that’s why we’re doing what we’re doing, isn’t it?"
[Host] "Yeah. You told me about the story with trying to contact the IRD that was quite difficult."
[Vic] "IRD… Oh yeah. The IRD isn’t a… they’re trying to get updated with technology but if you’re a bit hearing impaired, it can be quite difficult to get through to them because they won’t reply to emails, umm, unless you’ve got an account with them already, and the problem I had was I couldn’t log into my account to email them through my account. And they were like, “No, you have to phone us, or you have to log into your account to email us through your account,” but you can’t log into them to email us. And I wish that a lot of the government departments had better systems in place for people who either can’t use the phone, or just don’t want to. Technology is there, why can’t we just use it?"
[Host] "And, and, a lot of people have phone anxiety, which is something we don’t realize."
[Vic] "Oh, yes. Yeah, yeah, you wouldn’t believe it, but I’m having a heart attack right now. I’m so bad on the phone. I’ve been preparing for three days for this!"
[Host] "But if you didn’t tell us that, I don’t think any of us would have picked that up."
[Vic] "I worked in a call centre for years, I’ve gotten really good at faking it."
[Host] "Yeah, so there’s a lot of things like this that we think are simple tasks, but actually they can become really difficult for people."
[Vic] "God yes, yeah."
[Host] "I used to work at a youth health centre and the number of people that really struggled to use the phone and then miss out on job interviews, or WINZ applications and things like that."
[Vic] "Yeah, absolutely. I actually have a story in that regard. I used to work for an insurance company, I won’t name names, but they’re actually amazing and I loved them so much, working for them was the best job I ever had. But this was back in like 2012-ish. Technology was still up and coming and a lot of the overseas companies have live chat on their websites now, but we didn’t. It’s not that common in New Zealand yet, but a few companies have it, like Mighty Ape have it on their website. But I actually kind of suggested it during a meeting with our brainstorming for different ideas on how to make their services more accessible – and now they have a live chat on their website, the insurance company does, and I’ve used it a couple of times, and oh, goodness, it is so much easier than having to call and sit on hold and struggle to understand person is saying. Oh, its great, yeah live chat should be on everything."
[Host] "Are there any companies in New Zealand you have approached and said here’s the best way of doing this and they have responded like the insurance company?"
[Vic] "Not that I’ve tried to. I haven’t really thought of it. I probably should. It’s part of my job now isn’t it."
[Host] "It is yeah, sounds like, that would be something. You mentioned before that there’s quite a few jobs for people with disabilities can’t do, but what are some of the jobs they actually can do?"
[Vic] "Oh, there’s tons of them, you’ve just got to know where to look. In America, at the moment, approximately, I think its 34% of the workforce do part of their work from home, so work from their computer at home. 34% is a massive number. I don’t think it’s quite that high in New Zealand yet, but it could be. There are all kinds of jobs out there you can do. You can do like editing, like my mum, write books like I do, you can actually do customer service from home. The insurance company that I mentioned before they actually, if you live in Auckland, you can do, you can work from home customer service for them as well, which is pretty awesome. But there are creative jobs, too. You can create websites, you can create graphic design stuff. If you know where to look and you’re willing to do a little bit of learning there’s so many opportunities on the internet, there’s thousands and thousands of jobs posted every day. I posted a… I’m pretty good at web design but I’m not great, so for our new website that I’m setting up at the moment, I posted a job listing on Fiverr.com. I want to set the website up so that people can either look at a dark version, or a light version depending on what their eyesight prefers, and I have no idea how to program this. So, I posted it up on Fiverr.com last night, and when I got up this morning, I had thirty job offers from different people around the world who are, “Yep, I can help with this. It’s cool, let’s do it.”
[Vic] "Yeah, so we’re sort-of competing with people from all over the world, but it also allows us to take job offers from all over the world as well. Half my clients are from … I’ve got a ton of friends in Poland, for example, Poland. The other side of the world, and I’m helping them publish books."
[Host] "That’s great. There’s been so many people if they want to write a book they just wouldn’t know where to start with something like that."
[Vic] "Yeah, absolutely. So, if you want ideas for that kind of thing, you can always start with your own life story. I always think that’s a good place to start. In New Zealand at least, biographies are very popular, or just write what you know, start with, you don’t have to publish your first thing you write. I mean, normal authors will write like five or six books before they publish anything, just to get practice."
[Host] "Yeah, and it doesn’t even have to be a full book, it could be just an article or something like that to start off with."
[Vic] "Absolutely, or a short story, or a kid’s book, or poetry even, poetry’s a thing."
[Host] "And as you said before, it doesn’t necessarily have to be published or anything, but just to enjoy the process of it and have a go of it. It could also be something that could help a lot of people."
[Vic] "Oh gosh yes. People need to remember, like any other artform requires practice. The more you practice, the better you’re going to be. You don’t have to show people your practice art. Your practice art could be terrible stick figures, it doesn’t matter. You won’t become Michael Angelo overnight. But, practice, practice, practice, practice, practice. Laugh."
[Host] "And when you said you started lots of books and sometimes it was quite hard to go on – what helped you go on? What helped you finish those books?"
[Vic] "The feedback from my readers. Even, honestly, my mum is my biggest fan, it’s kinda embarrassing, I write some adult stuff and she insists on reading it and she’s like “Oh, I really like the story line but… It’s a good book!” It’s pretty embarrassing. But just to keep going back to knowing that if you get there eventually, someone is going to enjoy it, even if it doesn’t sell for ten years, eventually, that book will reach someone, and it will reach someone that it makes a difference to."
[Host] "And how many books have you actually had published now?"
[Vic] "Ah, I have published six. I’ve got two or three that are almost completed, and I’ve got about ten that are works in progress."
[Host] "Wow, I can see you’re very busy writing all day."
[Vic] "Yeah, I get bored easily."
[Host] "Yeah. And so obviously today, you’ve talked about so many challenges with people with disabilities – what can our listeners do to help? What can they practically do to make a difference here?"
[Vic] "Ok. The most important thing is to believe the person that you’re speaking to. If someone says they have a disability and you can’t see it, just take their word for it. Not all disabilities are visible. If they can’t do something, believe them. If they say they can’t go out today, believe them. If they say they can’t walk up there, believe them. That’s all it really takes. Don’t pressure them. Don’t belittle what they’re going through. Don’t say things like what I mentioned earlier, don’t say things like, “Well, you’d feel better if you smiled more,” to a person with depression. Or “just calm down.” No, no please don’t do that, it does not help and its extremely hurtful. Most of all, just be kind. Disabled people are people too. No matter what might be wrong with us, we are still human beings, and we deserve human decency and respect. Stop and think before you speak: ‘Would you like it if someone said that to you?’ If the answer is ‘no,’ then just don’t say it. A little kindness goes a long way."
[Host] "The things you just said, they’re so simple things they’re not rocket science. They’re things that every single person can do."
[Vic] "Exactly. Treat people like people, regardless of what may be wrong with them or different about them. They’re still people. I watched a really good video on the internet the other day, and it said:
'People call us special needs, but that’s not true. Our needs aren’t special, our needs are human needs. All we want to do is live our best life and be happy… just like everyone else.'"
[Host] "Ohh, I like that one. Can you say it one more time please?"
[Vic] "Yeah, it’s good, right? People call us special needs, but that’s not true. Our needs aren’t special, our needs are human needs. All we need… uh, all we want to do is live our best life and be happy… just like everyone else."
[Host] "Great. And in terms of this Charitable Trust, ah if there’s any employers listening, ah what sort of employers would you possibly like to hear from?"
[Vic] "Employers who are interested in helping people who work from home, or work from their own space. We’ve got Workbridge, of course, already, who help people, disabled people get placed into jobs. But there are people out there who can’t actually go out of the house all the time to go to a job. Like me, I have chronic fatigue, and trying to wake up at a particular time every morning is just basically impossible. So, if you are interested in having low overheads, which is great, laugh… have your staff work from home… Feel free to get in touch with me, and I’ll see if I can hook you up with one of my clients."
[Host] "Yeah, and can you tell us about the website of the Charitable Trust, please?"
[Vic] "Umm, it’s currently still a work in progress, it’s a bit of a mess. I’m trying to put together a whole bunch of information for potential self-employed people who want to, people who want to get into the industry. I’m trying to make it so it’s going to be accessible for people of all ages as well, so I’m going to have some basic technological tutorial videos up there as well, like how to make an email address, how to join Fiverr... also one of the things I noticed when I was helping my mum was that, well... she’s pretty tech savvy, but there’s some things, like “I don’t know how to create a Paypal account. How do I do this?” And if I can just get some short videos up there, I think it will be great, or text-based tutorials, plus I’ll have links to safe websites, for where you can freelance, also try to liaise with maybe with Workbridge to hook up people there. Yeah, I’m also doing some projects on the side like we’re doing this ‘Scribes in Schools’ project which is, we’re hoping to get some success for creative people like my author friend. To go talk to school, to teach kids that, teenagers, that creative careers are valid careers. It’s one of the things that bothers me most about our society at the moment is that, that people are told that creative careers are not valid careers. But… if you look at our society in a thousand years’ time, our descendants are not going to see, “Oh, they worked nine-to-five jobs, it was great,” all the nine-to-five jobs, were the things that they’re going to remember. No, they’re going to remember our art, they’re going to remember our pottery, they’re going to remember our painting, our literature. If we look back at our ancestors, back at the Greeks, what do we remember them for? We remember them for their art, their pottery, their literature. We don’t remember what they did on a day to day basis. So, art is really important to who we are as a culture and a lot of people seem to forget that in our modern world. And that’s really tragic. Tragic to me."
[Host] "It is. Well, unfortunately we’re out of time, but Victoria, thank you very much for being on the show. Really appreciate your time today."
[Vic] "Oh, it’s great to be here, thank you for having me."
[Host] "Ok, take care."