I recently had the privilege of interviewing Tegan Morris about her successful pledgeme campaign.
Tegan raised $4,835, passing her goal of $4,000 to cover the self-publishing costs for her book, Not Always Lost.
Life is good for Shannon Carlisle and it seems like her high school senior year will be smooth sailing. But a terrible car accident changes that. It turns not just Shannon’s life upside down, but her boyfriend Richard’s too. Even with the support of those around them, will they crumble or thrive as they face old demons and an uncertain future?
Tegan is an advocate, public speaker, youtuber and author. She also has muscular dystrophy and uses a wheelchair for mobility and requires assistance with some general tasks.
What follows is a sort of condensed transcript of our conversation, which is why there’s a lot of long sentences. As Tegan said herself “I’m very rarely short of words!” If you’re finding it too long, skip to the last question. It was just an off-the-cuff throwaway to get back into it after I stopped for a drink, but I loved her answer.
Adam: When did you first have the idea for the book?
Tegan: That was probably about three years ago. I actually started writing it as a fan fiction, because at the time I was really, really into the TV show glee. It was at the end of the fourth or fifth season. One of the characters went through a short period of time aquiring a physical disability through an accident. So at the time I was like “wow, its a really interesting concept to kind of play around with in a story and have a look into how that might impact on her relationships with people. As I started putting in original characters around her, rather than just show characters, I really found that the original characters were taking up more and more space in the story, so I was like “ok, well, maybe I should just completely forget about these characters from the show and the constraints of these pre-constructed characters and just make it an original story. And even as I was going on then I didn’t really initially think it would turn into a fully blown novel. I was working with one of my support workers, who was kind of, for a time acting as a sounding board and writing assistant, that really helped with getting into it in a serious way. And then, when she left employment with me I kind of went into a bit of a writing hiatus. I didn’t really have a lot of inspiration or the writing process fully developed enough to where I could do it confidently by myself. So I had about nine to twelve months where I really didn’t touch it at all, and did other bits of writing for other things, that were either back to the fan fiction genre or writing articles for organisations that I’m connected to, for their newsletters or various other things but nothing directly to do with this story development. And then at the end of that hiatus I started working with a volunteer who became my writing buddy, and I started really getting back into creative writing. And then that lead me back into looking at my novel, or what became my novel. And then I worked with loads of other people as writing support, to help me with the dictation of the novel, or proofreading, or storyboarding, that kind of stuff. Because when I wrote, or when I’d written this one particularly, its been a very organic process. I never really brainstormed the story or planned ahead. So it was just kind of working with the initial idea and then seeing how things played out and all the ideas that occurred as we talked over what had happened, to see what could happen. And then using the developing character that we were trying to uncover and through these events say “ok this character has responded in this way to this situation so, if that happens down the track that means that it’ll have this implication to their actions, so it was a bit of an archeology I guess, of these characters. With the storyline, you uncover things as you go, and building up your knowledge of character as you go, rather than preplanning and having everything mapped out step by step.
Adam: It was a bit of a suprise to me, when I read the book, that so much more space was given to the impact that the access issues had on the main character’s emotions and relationships than to the access issues themselves, but relationships and emotions are clearly what interests you. There’s probably a good reason I’m an engineer, not a young adult author.
Tegan: For me, the intention for the book overall was around awareness raising for people, of the complexibility, but also the relatability of the experience of having a disability. Because (this is my impression as a person who’s been born with a disability and lived with a disability all their life) a lot of people who don’t have any understanding of disability whatsoever think that its “those people out there” who have a disability, but the reality is that so many people have disabilities and they’re not always so obvious as someone in a wheelchair, or in crutches, or seeing eye dog, to kind of show that they’re disabled and in terms of the relatability I wanted people to understand that although there are some differences to our experiences, there are a lot more simillarities in terms of our emotions and our experiences and our ambitions and all these other things, so especially for young people, I wanted to help them be able to relate to people who are different, whether its (in this case) disability, but in a general sense anyone who has difference in some way, because, I think, especially when you’re a young person its very easy to get put off and think, “ok, that person’s too complicated”, or “it wouldn’t look good for me to associate with that person” for this reason or that reason, but if they identify with them as just another person who has the same sort of interests in one way or another, then it becomes about whether their personalities fit together, rather than their social spaces fit together, and I hope that that would be a kind of positive outcome of bringing those sorts of things in a kind of subversive kind of way into the thinking of young people. And that’s why I chose a character who was in the beginning very successful, very popular and although she had a bit of history to her, which you find out through the course of the book, which gives her depth, I felt that she would be a good, developed character, that would help, when she goes through this accident in the car, and is partially paralysed, that she would still be relatable, because its about aquiring a disabilty after you’ve already got the sense of her as this succesful, driven, well connected, person within this highschool setting. So rather than just having a character that, from the get-go is disabled, if you like, I felt like that would be a little bit harder to develop a sense of connection for people who don’t have that kind of, maybe, awareness or openness of thinking to begin with. So there was kind of a bit of strategey about it on some level I guess, in terms of how I chose to shape, particularly, the main character.
Adam: Why did you choose to crowdfund?
Tegan: People said “why don’t you publish?” and I started looking around for publishers, but I guess, as a lot of people find, its a very very tough market to get into as a first time writer, without any preestablished credit in some other field, so I spent about a year, thinking looking for publishers, and I was approached by a publishing company over in the UK, and they said “hey, yes, actually, we’d be interested in your work, but you need to pay us X amount of pounds” which was a massive amount “to secure the publishing of this work” and basically offsetting the risk that would be in publishing the work and I was like “Umm, no, no thanks, not going down that path”. And so I realised that although they were sort of representing themselves as a traditional publisher, showing a logo and reputation, they were essentially just a publish-for-fee service. So I said “Ok, well I’m not really having a lot of luck here, finding a traditional publisher, who I was going to work with”. Still really wanted to get this out there and get it into people’s hands and hopfully get it into the community and into schools or whoever I can share it with, so I said “Ok, lets self publish”.
Adam: How long did it take you to make your video?
Tegan: It was actually a video that I had already made for my channel, so I kind of cheated in that respect, it was kind of a preprepared production of sorts, because I had written this piece earlier in the year, last year, where I was early on in the stages of editing and looking for publishers to start talking about my book, because I could kind of see it becoming a reality, even if I didn’t necessarily get it published the way I’d initially planned. It was one of those things where I kind of has this thing premade where I’d done stuff, yeah so I’ve got this thing, so if you’re interested, start talking about it, start sharing it with people, and see if we can get some interest going and initially yeah at that time it hadn’t moved onto anything, but it was the basis for the pledgeme campaign when we did that.
Adam: What was it like writing the information for the campaign page?
Tegan: I had talked it through with a couple of people, and said “hey, can you help me?” and we kind of did it over a couple of afternoons I think, just three or four hours each day, just throwing ideas around and kind of re-wording bits here and there and meshing things together and then saying “ok, is this as good as we can make it?”. Some of the girls who work with me on a regular basis, some of them have backgrounds with academic writing or creative writing or various other things and sometimes even just people who don’t necessarily have the writing background its just good to have people to be sounding boards, helpful to talk things through, throw ideas around with and just sometimes speaking ideas out loud can be a good way of clarifying things. And that was kind of also how my writing process was, that’s why when I hadn’t been working with someone closely around writing as a process I had come to a standstill, until I found somebody else who I clicked with in that kind of creative space and started those fires again, and started bringing it up and talking about characters and ideas and just sit there for several hours and kind of hash things out and say “well, what if this happened, how would that impact on this character or this event” and kind of measure things out and engage in things.
Adam: Did you get media attention?
Tegan: Yes, I was in the local paper, fortunately I had a pre-established presence with the local paper over the years with things I’ve done, things I’ve been a part of, shared. So they kind of knew about me, so I went and was like “Hey!”, well it wasn’t me directly, it was one of my friends, who is a journalist, who went to them and said “Hey, Tegan Morris has got this book that she’s trying to publish, and she’s got this pledgeme campaign, so they were like “hey, ok, sure, yep, we can share the story about that, sounds good”, so yeah, it was really helpful with kind of getting the awareness about the campaign
Adam: What was it like during the campaign emotionally?
Tegan: [even with press about the campaign] it was still very much a never-wracking “will it get the target before the deadline?” and I’m sitting there day by day, week by week, nail biting, because, for the longest time, it really was only shifting by $20 at a time, or it would sit there for a couple of days, or multiple days, with nothing at all. “Ahh! Its not gonna get there, its not gonna get there!”. All this money is going to have to go back to these people and like, I don’t begrudge returning people their money if I don’t reach the target, that just means I’m going to be even further away from getting this project done, which means so much to me, so such a real never-wracking time.
Adam: How did it feel when you actually funded?
Tegan: It was amazing and it was actually a very strange thing, because it was I think it was late on a Sunday night, it was actually one of my friends who’d seen it before I did and they put up this post on Facebook and they’d tagged me in it, saying “wow! Tegan’s just passed her pledgeme campaign target! Congratualtions! I’m so happy for you”, I was just like “What?” because it was like a day or two days befor the shutoff, and I’d been so, so scared that it wasn’t going to reach the target, and it had still been four or five hundred dollars short that afternoon “oh my gosh, oh my gosh” and then seeing this post from my friend, I was like “Are you serious? Is this for real?” so even though it was like, 11:30 at night, I went straight to the website and checked and I was just like “oh my gosh! Yes! It is real! This is actually happening!” So happy! And then I was just going all over social media, going “YAY!” and just kind of doing cartwheels in my head and feeling so stoked about it. And then I started obviously getting caught up and thinking, “now that I’ve done this, what will I do next?” and just sort of jumping ahead with plans and that sort of stuff, but it was a really good feeling.
Adam: what was it like once you’d finished the campaign and had to actually make it happen?
Tegan:The only illustrations we had to work out were the cover and the formatting and printing. Because I was self-publishing, I sought out a publishing supervisor so I worked with a guy called Martin Taylor, up in Auckland who’s had 20 odd years of publishing industry and understands the ins-and-outs and has contacts with publishing services in various places. So he was able to kind of walk me through the process of making sure that the editing that I’d had done was far enough that it was ready for the formatting, and cover design, that kind of phase. Because when I went to him initially I said “tell me what you think I need doing” I told him I had had intial editing done, he said it didn’t need further editing from his perspective, so that cut down a little further expense, and the he had contacts with a graphic designer who helped create the book cover and when I went to see it with Martin, up in Auckland, we spent two or three hours talking over formatting options and text type options and size options and cover ideas for the cover and I took my mum along, because she’s a visual kind of person, whereas I’m not really so much a visual person, it takes me a long time to really see how stuff will work, to see how I will respond to things, whereas she’s kind of a see it, understands it, can respond to it kind of person. And we both intially liked the cover design that he’d offered, but then when I took it away with me and we had the kind of internal stuff hashed out already, I still was see-sawing a bit about the cover and I started showing it around to a few people, and there was mixed responses, and there was a lot of people who said “yes” and there were other people who said “not so sure”. I thought “maybe try something else” I want to have it as strong and as non-problematic cover as possible. My only directives to the graphic designer had been I want it as gender neutral as possible and with strong text and I didn’t want it to be cluttered in any sort of way with pictures or fluffy things or text or anything like that. In the end, after discussion with people, I ended up coming up with the design that they went with, so the graphics designer just put it into the professional software that they use. They had chosen the colours and stuff.
I think it was about a month and a half after the campaign had closed that I was able to start actually having the books infront of me and working out how I was going to send them out to backers.
Adam: how did it feel when that first box of 100 actually arrived?
Tegan: That was pretty awesome, I’ve actually got some photos, footage of me and my dad taking a penknife to the top of the box and being like “yes!” and having the books all over and around me and “yes!”.
Adam: How did you feel once you had completed, sending all the books off to all the backers?
Tegan: Yeah, it was pretty amazing, it was like “yes, this is another succesful part of the stage of actually having something to kind of physically have my hands on and kind of show that this hard work has actually created this thing.
Adam: Are you selling the books now?
Tegan: Yes, on Amazon, book depository, hoping to have it on audible. I really want to get it into audio book form, because at the moment I’ve got the digital version through kindle, which can be played on various readers. I’d really like to get it into audio book format because I know that’s quite a rising market and there are a lot of people who would prefer to listen to a book than to read a book, whether its in digital copy or physical copy and also form an access point of view, it makes it a lot more accessible because if people have vision issues they can’t read so easily if people have significant physical impairments, they can’t necessarily handle a book and they may even struggle to access technology to digitally turn pages, so having an audible book is kind of the ultimate in accessibility.
Adam: Tell me about your youtube channel?
Tegan: my youtube channel is called Tegan Meets World and its basically all about positivity and fun and kind of trying to think openly in different ways and it just so happens that I have significant physical disabillity and it is part of shaping my impression and my experience of the world but my content is kind of all over the place, you know, its travel and its video diaries and its rants and its reviews and its interviews and cooking videos and its just all kinds of stuff and in a subtler way its becoming more and more about the relationships I have with people and how they bring different things into my life and that’s kind of the common thing with the story in my book. Because it is very much about thinking and the power of relationships to shape a person’s potential.
Adam: Why is your hair purple and blue?
Tegan: Ah… this is the outer representation of my inner energy. I’m not meaning that in an airy-fairy kind of way, but I have quite a bright personality when you get to know me and I have a lot of words to share, given the chance, but as I kind of mentioned, a lot of times people can be reluctant to make those kinds of connections initially because they see the wheelchair and they see my very still physical person and so they kind of start initially making assumptions about, you know, “does her brain work?”, “how do I start a conversation?”, you know, “the wheel chair is really intimidating”, all that kind of stuff, and that’s something that a lot of disabled people face, but, I mean, everyone obviously different personalities and different ways of dealing with what their disability means to them, but for me, I’ve kind of got to the point in my life where I kind of want to grab every opportunity that I can and have my life be as exciting and dynamic and fun as possible, so I have bright hair as a way of breaking the ice, I guess? And showing my inner sparkle on the outside. It gives something for people to comment on, or start a conversation with. You know, its that same as people maybe who have vision impairments will have an assitance dog, people will come up and have a conversation focussed on the dog, rather than the person’s physical situation and the same, when I was younger, I had a maltese terrier dog, which was a little cute fluffy thing and so many people would come and stop and say hi to me “your dog is so cute”, “can I pat your dog?” “what’s her name?” “what breed is she?” et cettera, et cettera, and that was kind of an icebreaker and it gave people the “in” to start a conversation where they wouldn’t necessarily approach a person who’s just going about their life being who they are, or a person in my situation, or simillar situation where we’re different in some way, it can catch peoples attention, but they don’t have any valid reason to come and start a conversation. Whereas if you’ve got a cute dog, or if you’ve got bright purple hair, it gives people something else to put their attention, to put their interest into, rather than having been caught being curious or staring unintentionally, which is something that kids and even some adults still do these days, just they’re not used to people being in their community, living their lives and just being as they are, whether that’s in a wheelchair or some other form of disability but wheelchairs are the most obvious representation of disability, so its still kind of the most … I’ll use the word shocking, but its not quite the right word. Its kind of the most stand-out thing so people can be like “oh, that’s interesting, to see someone in that situation here, how do they manage?” and try to imagine how they do what they do or how do people with them get them to manage what they’re doing. Because its something that’s such a foreign concept to how they go about their lives. So you see kids staring, you can kind of say “oh, kids are just curious, they don’t know any better” but then you see the adults kind of trying to reprimand them for being curious and not knowing how to interpret what they’re seeing, its like, I’d rather go up and say “hi, I’m Tegan, how’s your day, are you enjoying what you’re doing” and show the kid that, yeah, I’m a person, I’m not some sort of strange being or a machine or whatever their imagination creates as a reason for them to understand what they’re seeing, because it doesn’t help for the adults to shame them or reprimand them for trying to understand something that they haven’t seen before. That’s why I’ve started doing these things, like the empathy project, because I want to give people an kind of physical understanding, or a real understanding and have somebody who’s not used to it being put in a situation where they experience a little bit of what it can be like. Because that can really point out the strangeness maybe, or how it differs from their day-to-day, whereas, if its somebody in my situation, I’ve been this way from birth, this is my lived experience from both, so things like being out in public and having people notice me, or to stare or whatever, I very rarely actually notice that, wheras there are other people who have disabilities maybe who are still more self-concious, or maybe newer to the experience of being disabled, or for whatever reason, and they still feel very much aware of things like people’s curious behaviour. They aren’t necessarily clear enough in their understanding or what it means to them or their confidence to talk about it, to be able to clearly represent that to other people. So having people who have no concept of what it would be like, put in that situation and then be able to translate it with their own experiences, I thought was a really good way of helping to lay the groundwork for other people to be more aware and I’ve kind of got plans in the next few months to maybe find some more volunteers and a new location and repeat the same sort of process.
I hope you’ve enjoyed my first interview as much as I did. I’m hoping to interview more crowdfunders, though the format may change quite a bit as I figure out what I’m doing.
Thanks for reading!