Disability, Youth and Storytelling

Joeita Gupta:
I'm Joeita Gupta, and this is The Pulse. Writing has been described as a window to the soul. People with disabilities write in many ways, pens and papers, speech to text software. Maybe they record their words and have someone else transcribe them. We as a community with rich and varied experiences are hungry to tell our stories.
Stories that deal with the daily minutiae of living with a disability, stories that tackle bigger questions and deep ideas, stories that make us laugh, cry, maybe sit up and take notice. Stories that say to the world, "We are out there." We have stories to tell because we are living lives, having adventures and we aren't going away. Stories matter, the end. Today we discuss disabilities and short stories. It's time to put your finger on The Pulse.
Hello and welcome to The Pulse on AMI-audio. I'm Joeita Gupta joining you from the Accessible Media Studios in downtown Toronto, from a different place in the studio, actually. I'm back in what is known as Studio 5 way back when when I used to do a morning show for Accessible Media. I used to host it from this room, Studio 5.
So, it brings back a lot of fond memories of good interviews and good guests, and I had a lot of fun working in this space. So it's good to be back, just to describe it, behind me is a black wall, there's a two-toned black wall with blue and yellow squares on it. So, I'm sitting in front of this wall in quite a comfy chair and I think I've worn this on the show before, a pink sweater with a round neck.
And, my hair is of course black and it's tied back in a ponytail. I was saying to our videographer, Matt McGurk, that I think I'm doing a bunch of shows about short stories. So, I might take a break from the short story a bit for a while on this program, but there was a great program and an exciting project at the Holland Bloorview Kids Rehab Centre.
They do such good work, and this is a collection of short stories by and for people with disabilities. It's called As I Live and Breathe, and it really encompasses the lived experiences of youth with disabilities, and you'll be hearing from one of the storytellers in the program later on today.
But first, I'm really delighted to welcome to the program Dolly Menna-Dack, who is the project lead on this book, the short story book, As I Live and Breathe. Dolly is a clinical and research bioethicist and also a youth engagement strategy lead. Hello, Dolly. Welcome, it's so nice to have you on the program.

Dolly Menna-Dack:
Hi, and thank you for having me. I'm excited to be with you today.

Joeita Gupta:
So, Dolly, this is a book about people with disabilities by and for people with disabilities. How did it all come about?

Dolly Menna-Dack:
It's a great question, and I'm really appreciative of the opportunity to talk about As I Live and Breathe, which is a short story collection written by authors with lived experience of growing up with a disability. For many years, the youth engagement strategy at [inaudible 00:03:39] Holland Bloorview Kids Rehabilitation Hospital has been engaging with current and former clients in that youth age range, so teens and young adults really looking for a way to ask those current and former clients if they would like to turn their lived experiences of disability and their lived experiences of receiving healthcare from [inaudible 00:04:05] Holland Bloorview into change, and one of the ways that we've been leveraging that knowledge and expertise that our youth aged partners are bringing to us is through creative arts projects.
And, over the last five years, we've engaged actually in five different arts-based projects, and the short story collection has been really a labour of love. We started in February 2022 and we launched the collection on December 1st, just a few days before the International Day of Persons with Disabilities in order to have our launch coincide with that celebration.
And, this project came about as a way to enable our youth leaders to share and express their stories in a community. So it's not one author, one story, it's a collection. And, the group was very much a collective learning and writing group as well, and the youth leaders are a very close community, but I think what that represents is how important it is to find community as you're growing up and with the identities that you bring to the table in your life. And so, this is a way for individuals with disabilities to connect to their community beyond these stories.

Joeita Gupta:
You mentioned learning, and I would imagine that part of that is learning how to tell your stories for the purposes of writing this book. How did you train or engage with some of the youth leaders to help them become better writers?

Dolly Menna-Dack:
So with this project, we actually engaged an artist facilitator who was our primary editor and curator of the book. She was a wonderful artist facilitator. Her name was Mary Anderson, and we had her as our program manager. And throughout this project, we engaged in a series of workshops that focused on writing styles, that utilized writing exercises, prompts, peer critique and discussion.
And also, there was many rounds of editing by myself and also by our artist facilitator. And alongside in parallel, the youth leaders started a book club nearly 18 months ago to explore the writing that was already out there of authors with a disability who were writing, of authors writing about characters with disabilities, and also of issues facing transgendered youth. So, specific and broad at the same time, but those were the two preparation vehicles that we used in this learning writing journey.

Joeita Gupta:
I'm wondering, who would you say is the intended audience, was it other people with disabilities or were you targeting the book more towards able-bodied people?

Dolly Menna-Dack:
Oh, I would say that I could talk forever, but I will say this, there was a distinction between the delicacy of the approach to disability when the authors themselves were disabled. There was definitely in our book club the recognition that the experiences were easy to understand and common in the disability experience, and I think definitely new to an able-bodied reader.
And so, that was really apparent, and then also what was really apparent was the distinction that some adult writers... So, these are really youth writers in this short story collection, and there was a recognition that adult writers really dug into some distinctions between things like activism and advocacy.
And those sparked debates, debates that were really interesting amongst the youth leaders about what are those distinctions and what makes you an advocate or what makes you an activist, and really created an opportunity for the experience of reading to create critical reflection. And, I think that that piece is what's really important because writing doesn't always represent us. And so, to look for that representation was a feat. And so, this collection really seeks to close some of that gap, to provide stories of young adults and youth with disabilities sharing their experience, so that others can connect and feel as though they have a broad community.

Joeita Gupta:
Of course, the disability community isn't just a monolith, I've said this several times on the program. In what way would you say the book is representative not just of different disabilities, but of different experiences of living with a disability?

Dolly Menna-Dack:
It's a great question and one that I believe you might get a different answer from each member of the contributors. I think it's everybody. I think that it serves a really important purpose for youth with disabilities and young people to read and feel less alone, to feel as though other people understand their experience, other people have similar experiences, and it's the unusual things that bring us together.
I think that piece is really important and I think the writing is accessible, so that an able-bodied reader and the general public can connect to these stories because there's a lot of beautiful explanation of the experience of the other or of difference, and there's explanations of problem-solving that goes into being a person who's living their life with a disability. So, I think everyone can really get something out of this collection.

Joeita Gupta:
It's clearly a labour of love and you've spent so much time on it having conversations about it, editing it. Now that it's all done and dusted, Dolly, what are your key reflections?

Dolly Menna-Dack:
That's a great question. It's funny, the thing that connects them all is the authors all identify as individuals with a disability, but there is the differences in other social locations., So social locations such as age, specificity of disability, education, new immigrants or Canadians or what it's like to access healthcare, if you're the one directing your care or if your parents are directing your care. So, I don't want to give it all away, but definitely, we'll see a variety of intersectionalities throughout the stories in the book.

Joeita Gupta:
It is such a great book. I have to ask you if it's available in audio format and where we can pick up a copy if we'd like to have a read?

Dolly Menna-Dack:
So great questions, right now you can find out about the As I Live and Breathe short story collection on the Holland Bloorview webpage. It has its own page dedicated, and on that page, you can read a little bit about each one of the authors. There's a short bio and there is a short excerpt from each of their stories. Also, one of the stories was the illustrator for the book and created both the cover art and an illustration for each story, and that actually was Lexin. Lexin Zhang did all of that artwork, and then on that website you can order from a third party, you can order a copy of the book, and then eventually the book will be available in more formats. Right now, it's a copy from the printer format.

Joeita Gupta:
I realized I should have mentioned this earlier in the conversation, but one of the nice things about this book is it's giving a lot of young writers a start. You write and you contribute to this book and suddenly it's hopefully something that you as an aspiring writer can funnel into other writing projects. I would imagine that's a really nice thing for everyone involved as well.

Dolly Menna-Dack:
Yes, it's my hope that it will also be the beginning of a long creative career for many of our authors and for other ones, you'll find individuals who are professionals in their own careers already and they use writing as a way to stay connected to the experiences of even being a professional with a disability. And so, I think that it's offering both a launching pad and an outlet to express the intersection in one's life.

Joeita Gupta:
Thank you, Dolly. It was so great to speak to you about this project and congratulations. I'm so happy to have you on the program.

Dolly Menna-Dack:
Thank you for having me. I hope you have a great day.

Joeita Gupta:
Dolly Menna-Dack was the editor on the anthology of the book, As I Live and Breathe. I'm really pleased now to welcome one of the contributors. Lexin Zhang is a writer and an artist whose work is featured in the book. Lexin, hello and welcome to The Pulse. It's so nice to have you on the program.

Lexin Zhang:
A pleasure to be here, thank you.

Joeita Gupta:
Lexin, tell me a little bit about how you got involved with this project.

Lexin Zhang:
So, I am a youth leader at Holland Bloorview. I was previously a client, I've graduated since then. So every year, Holland Bloorview and Koffler, an art institution, they partner up and have these projects every year. So, that's how I got involved.

Joeita Gupta:
And, you've written a short story which you contribute to this book. Tell me a little bit about how long you've been writing.

Lexin Zhang:
Oh, I've been writing as long as I can remember. I think I've been writing since I was six. I remember writing books and stories and making my own stories ever since then.

Joeita Gupta:
And, what is it about writing that is so important to you?

Lexin Zhang:
I think it really does transport me into other lives and experience other experiences I myself might have not experienced. I think I just feel a great more empathy when I'm able to read other stories. I just feel closer to people when I understand different perspectives and their stories.

Joeita Gupta:
Would you say that in writing about your disability, when people go to read your words, they would hopefully have more empathy for your lived experience as a person with a disability?

Lexin Zhang:
Exactly, I think writing about my experience of disability from that perspective, I hope it gives other people perspective. It lets them see a different kind of story and it makes me feel like I'm part of a larger conversation in culture, in literature.

Joeita Gupta:
So, tell me a little bit about your short story. In a few words, what is it all about?

Lexin Zhang:
Right, so my short story is about this girl and her grandmother and they are having a conversation on the TTC. It's a very simple setting and it's just about the relationship of this grandmother and this child, and it's about intergenerational relationships, the immigrant experience, the disability experience, and the guardian-child relationship.

Joeita Gupta:
Why don't you go ahead? I know you said you were going to do a small excerpt from the short story, so why don't you go ahead and read out a little bit so we can get a sense of what it's all about.

Lexin Zhang:
Sure, so the book, As I Live and Breathe is a collection of I believe nine short stories and all you need to know is that they're on the bus and Chinese for grandmother is [foreign language 00:17:00].
"In the moment, the blazing winking sun faded. At the next stop, people filed off the hissing bus, clutching their bags to their chest. As floating raindrops stained their clothes dark, sheets of rain slapped the pavement angrily. An old man in faded brown socks and a windbreaker hobbled in. I stood up, gesturing my seat to him. Feeling those eyes on me, I tried to picture myself with guessing the Chinese characters printed on the papers that were stored in a red newspaper box beside the bus stop. The rain was relentless, stray newspapers melted onto the sidewalk like a second [inaudible 00:17:54], clinging to the cold land. 'What would you do without me?; Everything. Everything, I wanted to say. I will do everything you've ever hoped for me and mama and papa. I'll make this long trek away from home worth it. I'll make everything, even the pain worth it. I just didn't know how." And, that's the little section.

Joeita Gupta:
That is such a beautiful story. It so much resonated with me and I was thinking especially about all the reactions that people have when they see a person with a disability on a bus, on a train in any kind of public transit. You mentioned the TTC, which is the Toronto Transit Commission, and so when an abled-bodied person sees a person with a disability on the bus for example, they might think, "Oh my God, you're so brave," or they might feel sorry for you. When someone reads your book, what are you hoping they will start to think about? What kind of perceptions do you hope to change about people with disabilities?

Lexin Zhang:
I think particularly for me, because I look like a young person and at times I don't use my cane, at times I do, people might make assumptions of like, "Oh, why are you sitting down on the accessible sitting area? You look like a young person." I've had that kind of experience before and I think I just want people to understand that there are all types of disabilities, there's visible and invisible, and even if they do have a visible disability, but you don't think about that right away, it's possible that they still do and it's important to just be open and understand that people who need the area for seating will voice that and just be respectful of it.

Joeita Gupta:
I want to say that maybe... Oh, sorry, I had a bit of reaction here. Let me just do that one again. That is a really good point. I'm thinking back to a guest I had on the program maybe three months or so ago, and she was mentioning that when writers with disabilities write about their disability or about their experience with their disability for an able-bodied audience, what they're really doing is in a sense translating that lived experience for an able-bodied audience member. Would you say that you think of yourself similarly, not just as a writer, but almost as though you were a translator?

Lexin Zhang:
Interesting. I don't think I've ever seen it that way. I think my goal every time with writing is to really just have my experience, my stories out in the world. Sometimes I'm unable to find stories that resonate with my experience specifically, and that therein comes the desire of making those stories exist for myself. So when I'm writing, I'm not really thinking about translating it for an able-bodied audience, more so I'm just kind of wanting myself and my experience and experiences of other youth with disabilities to be visible in the world.

Joeita Gupta:
Do you hope that part of what people will do once they read your book is start to take some action? I know early in our conversation you said, "I really want people to change their perceptions about who it is that they think needs that accessible seat on the bus," but are you also hoping to see advocacy or activism go beyond that kind of attitudinal change?

Lexin Zhang:
Yes, I think just in general, the idea of wanting to be seen more as humans, more diversely, and more three-dimensionally multifaceted humans. I think that's definitely a goal of mine when I'm making characters of any kind.

Joeita Gupta:
Well, you're not just a person with a disability, Lexin, any more than I'm just a person with a disability. You're Chinese, I am South Asian, and I'm curious about how you feel your identity as someone who's Chinese might intersect with your lived experience of being a person with a disability.

Lexin Zhang:
Right, yes. So, I've only recently been exploring the intersectionality of my identities in writing, and that's been a really interesting journey for me and honestly it's been a difficult journey as well because I think I'm living in Canada and it's a different experience from people who live in China and how that culture interacts with the other aspects of my disability and womanhood. It's a journey that I'm still on.

Joeita Gupta:
So, how many stories about Chinese women with disabilities are out there?

Lexin Zhang:
I've been looking and I don't think I've yet found many that have resonated with me, but I think this year I've made a personal goal of mine to read more broadly and find those hidden gems of stories that explore that kind of intersectionality that I can relate to.

Joeita Gupta:
Well, Lexin, it just goes to show you why your story is so unique and so beautiful. In the years to come, what are you hoping to accomplish as a writer? How are you planning to hone your craft?

Lexin Zhang:
I do believe I am at the start of my rating journey and just the craft in general. I have so much more to learn, so many more years to grow and experience life that can help in my writing and just my writing pieces. I hope to be a writer that is honest and vulnerable and really does touch people and reach people, and I want to be able to be a connection to the mainstream world and be like, "I'm here. People like me are here and we have stories to tell and they are valuable and they're deserving."

Joeita Gupta:
Lexin, I have to ask and look, I ask all aspiring writers, do you or don't you like to be edited?

Lexin Zhang:
I do like to be edited. I like that process of feedback and knowing how others respond and how I can improve. I think I much prefer editing over the first draft. I think first drafts are very daunting and the blank page is a very intimidating blank screen to look at.

Joeita Gupta:
Lexin, thanks so much for being on the show. It was so great to have you with us today and congratulations on your contribution to the book and on the great artwork that you did, and I'm sure you will go on to write and do other amazing things down the road. Thanks for speaking to us.

Lexin Zhang:
Thank you so much for having me.

Joeita Gupta:
Lexin Zhang was a contributor to the anthology put out by the Holland Bloorview Rehab Center. That's all the time we have for today. I've got to wrap it up, but I hope you will reach out to me with any feedback you may have. You can write to feedback@ami.ca. You can always give us a call at 1-866-509-4545 and leave us a voicemail as well as your permission to play the audio on the program. You can find us on Twitter at AMI-audio and use the hashtag Pulse AMI, and of course you can find me on Twitter at as well at Joeita Gupta if you'd like to get in touch with me directly. We are on Facebook and wherever else you go for social media.
This has been a really exciting opportunity to talk to you about short stories and they are really important to me. They mean a lot to me, I enjoy reading them, and I always enjoy talking to people who write them, but as I said, it's time for us to go. Our videographer today has been Matthew McGurk. Ryan Delahanty is the coordinator for podcasts at AMI-audio. My technical producer is Mark Aflalo and Andy Frank is the manager for AMI-audio. I've been your host, Joeita Gupta. Thanks for listening.