His Name is Nicholas

Inspired by an accident ten years ago that left her brother with a life-changing intellectual disability, a young B.C. artist creates a book about inclusion. DDA chats with Invermere's Veronika Kitzul.

 

TRANSCRIPT

 

His Name is Nicholas

 

00:05

Welcome to DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. One of DDA's biggest missions is to create a community where everyone is included and where everyone belongs, regardless of ability. Sometimes that comes down to simply supporting and advocating for those who have the same mission. Today, we are talking with Veronica Kitzel, who lives in Invermere, B.C. Now, Veronica is an artist with a huge amount of talent.

 

00:33

especially working with charcoal as a medium. Now currently she works as a social media manager and artist by day and bartender by night. And while she is the messenger here, she isn't the story, her brother Nicholas is. When her brother was eight years old, he was in an accident in 2012 that changed the course of his life with an intellectual disability. We know that when someone has a disability, society makes it hard for them to be included. So...

 

01:00

Veronica wrote and illustrated a kids book to help foster a sense of inclusion in people at a young age. The book is called His Name is Nicholas is now available as a teacher's aid. Welcome to the show, Veronica. Thank you so much. So when did you get your start in the art world? Is this something you're currently pursuing as your your main profession?

 

01:26

I started drawing in a junior high and learned about art through high school and university, receiving a minor in fine arts with my science degree. Since graduating, I've been working part-time as an artist as more of a side business than a full-time profession. I hope to always find time for art in the future, but I also hope to go back to school for something healthcare related like dentistry or naturopathic medicine.

 

01:50

naturopathic medicine, that's interesting. Now so, Art, is this something that you use your voice with? Is this something that drives you to make a change in the world?

 

02:02

Oh, definitely. The beauty of being an artist means that you have the ability to reach a wider audience and communicate visually in ways that other people cannot. There's nothing wrong with doing art for fun or for the challenge. But when you focus on a subject or a message and get the chance to exhibit it, you can show people a perspective that they may have never considered before. So where do you draw a lot of your inspiration from?

 

02:28

It depends on the project. So when I want to develop my skills, I choose a subject that I find challenging. For example, water, reflections, and glass are difficult to capture. So I've taken inspiration from work as a bartender and drawn a couple processes in mixology. When I was in university and had free range to create whatever I wanted, I drew inspiration from healthcare, combining my scientific and artistic interests, as well as Nicholas. So for example, for a digital art class,

 

02:58

to give hope to people facing brain injuries in Canada. I also created an installation piece with drawings of Nicholas and his story. They were surrounded by a cover with the disability symbol cut out of it. And I did this because I felt like his wheelchair all people see when they first meet him. So I wanted people to physically go up and look through and look past that symbol to learn more about him, his story, his personality, et cetera.

 

03:28

I'd just say overall, I'd say healthcare, my brother, and moving to the mountains have been my biggest inspiration. So before we start talking about Nicholas and the book, where can people see erot? Can they buy it?

 

03:41

Absolutely. Here in Invermere, they can see it at Black Star Studios, Beginnings Restaurant, and Ular Bar. Online, people can see my work on Facebook, Instagram, and direct message me through social media if they're interested in buying a piece or commission. Well, that's great. We'll get a little bit into more into connecting with you later on. So, right from the start here, tell us a little bit about your brother.

 

04:04

for sure. So growing up, Nicholas was always an active kid. He would rather go bike riding, play soccer or play with Lego instead of playing video games. He was well behaved, received good grades in school. And yeah, he was overall just a great kid.

 

04:19

When he was eight years old, he had an accident at school. So the teachers required him to wear a hall pass on a non-breakaway lanyard when he went to the washroom. The floor had been slippery and he fell. The lanyard somehow got caught on the bathroom door latch. Unable to free himself and laugh for a better term, he was essentially strangled until another classmate saw him in the bathroom stall and informed the teacher that something seemed wrong.

 

04:48

So from that, he received an anoxic brain injury because the oxygen was cut off to his brain. The doctors at the hospital didn't give us much hope. They said he'd be abuturable in a bed, on drugs for the rest of his life. They implied that cutting off life support and organ donation would be better than living with no quality of life. Thankfully, my parents did not take no for an answer, especially my mom. She would stay up late every night researching alternative treatments and eventually weaned him off all medications.

 

05:17

So for several years she quit her job just to take care of Nicholas and take him to therapies and treatment. Today, he's still wheelchair bound and has a bit of trouble communicating, but he can say some words and he has surpassed every low expectation that the Canadian doctors have given him. That's pretty unbelievable. I mean, what a testament to your mother.

 

05:45

That's incredible. So, how old were you when he had this accident? I was 14 years old when he had the accident. And so when that happened, how did that make you feel? I felt very powerless and I wanted to take his place because he'd always been such a good kid and he deserved the world.

 

06:04

He deserved everything that my older brother and I experienced, but instead it kind of felt like his childhood was taken from him. I still remember the morning of the accident. He was on his way to the bus stop when I just got out of bed. I thought to myself, I should say goodbye to Nicholas. Oh, that's okay. I'll see him after school. And I have never regretted anything more in my life than when he didn't come home that day.

 

06:25

He was in the hospital for four months and I was still young. So people didn't really know what to tell me. They said he was in this half coma sort of thing. His eyes were open, but they weren't moving much and he could cry, but he couldn't speak. So the hardest part was coming to the realization that he wasn't in a coma. He wasn't going to magically like wake up someday because he was already awake. He had just lost his eyesight and the ability to speak. And it was going to be a long road to recovery.

 

06:53

Well, that must have been quite devastating for your family at the time. Mm-hmm. No, so tell me a little, I mean that was, you know, back in 2012, you were already a teenager at this point, so what was it like growing up from then with a sibling with a disability? It's a really interesting question that I don't think I've been asked before.

 

07:14

Everything changed after the accident. It started with a family meeting with my parents, myself, and my older brother, Jacob. They said they wanted to create the best quality of life possible for Nicholas, which meant they wouldn't be there for us as often anymore as they had to focus their energy and resources on him. Jacob and I understood because we also wanted the best for Nicholas, and so we grew up quickly because of that. We put Nicholas's needs first, which meant helping with his feeding, therapies, et cetera, before completing our homework.

 

07:44

for our own school trips because adaptive equipment is incredibly expensive. Adapting to wheelchair accessible life is difficult and you don't realize how truly blessed you are with mobility until you experience life without it. I felt that no one really understood the extent of the changes we made except for other families in similar situations. Right.

 

08:06

That makes sense. Now, studies also show that siblings who grow up with someone with a disability become more empathetic. Do you feel that about yourself?

 

08:16

I think it's definitely made me a more empathetic person. I would have never understood what wheelchair accessible life entailed until I was part of it. I think it also made Jacob and I more grateful, independent, and mature. It inspired me to volunteer for Special Olympics and work as a personal carrier for several years. Oh wow, good for you. So now getting back to why we're here, we're talking about your book, His Name is Nicholas. What inspired you to write that?

 

08:45

or I should say illustrated. I know your mom was the one who actually wrote the copy for the book. So what what brought this inspiration to where it is today?

 

08:57

Yeah, so I was doing a self-led project with Special Olympics based on spreading the word on inclusion. So naturally, I took inspiration from my family and the fact that it really bothered us when kids stared at Nicholas. Additionally, I took a literature for youth class in university and remembered learning about the CCBC diversity statistics on children's books. In 2019, they found that only 3.4% of books had a character with a disability.

 

09:27

the population of people with disabilities is much higher. There's a huge under-representation of that and as well as a lack of exposure and integration in schools, which is why I want to create a tool that could help teach kids about inclusion. So where, but when you look at society as a whole, how do you think we're doing in terms of inclusion, inclusion rather here in 2023?

 

09:52

Um, from my family, my family's perspective, not great because after Nicholas's accident, I saw him lose all his friends. People stared at him. People no longer talk to him in an age appropriate way.

 

10:09

They would use baby talk when he was a teenager and that really bothered me. I think there are certain organizations that do a great job at it, including their members with disabilities, but overall there just seems to be a lack of understanding in the general public. Yeah. In bigger cities tend to do a better job of making places accessible as well. And Canada seems a bit behind compared to the states because we've traveled there a lot for Nicholas's treatments.

 

10:38

So like, for example, we learned that every public pool in the States must have a lift, which is not a rule here. And we noticed way more accessible parking spaces, walking trails, ramps, stuff like that, that makes wheelchair accessible life a lot easier. Wow. Now, your mom helped with the writing. Tell us how that went.

 

11:01

Well, first, I just want to mention how she is a saint for agreeing to write it in her non-existent free time. She works full time as a teacher, then she goes home and does mixed therapies, cleaning, and evaluates the practicum students that help out. Overall, it was a great collaborative experience, though. I gave her the illustrations with a rough idea of the storyline and things I wanted to include. She wrote the book and we would video call to discuss it. My mom's colleague, who is an English teacher and has experience with special education,

 

11:31

the book and since I wanted this book to be a tool for teaching it was a great asset to have two very experienced teachers involved. Yeah that is really good. So where do you want this book to be seen? What is your intended audience?

 

11:49

My intended audience is elementary students because they're curious and probably have the least exposure to and understanding of disabilities. We found that they also stare at Nicholas because they're curious and often don't have anyone who can explain that he's not that different or how to interact with him.

 

12:13

I didn't have an official publisher for the book because I didn't want to sell it. My goal was just to distribute it to schools, teachers, anyone willing to use it. And honestly, making it on this podcast has allowed me to bring it further than I imagined. And I'm so grateful for that. Yeah. And we're happy to do this for you. And the fact that you're...

 

12:35

doing this all for free is absolutely amazing because you're an extremely talented person. So what has the reaction been so far? Have you managed to get it into some classrooms at the moment?

 

12:48

Yeah, the reactions have been really heartwarming. Honestly, I have gotten a ton of support from my teacher friends who want to use the book in their classrooms. The local libraries and schools have taken it in and the local newspaper wrote about it. From that article, people with intellectual disabilities have actually reached out to read the book as well as share it with others because they were just so excited to see a project like that. Um, it also made it into my mom's school. She was a guest speaker at a big celebration of learning event.

 

13:18

and I got to go in and help her answer questions. That's excellent. And so are there more books like this to add in your future? Or maybe a Nick... I mean Nicholas is older, he's older now. What's he up to today? Is there like a book about Nicholas and his later teen years as he approaches 20? Maybe for a bit of an older audience?

 

13:41

I'm not sure about books in particular, but if another opportunity arises where I can utilize my artistic skills to spread awareness on inclusion, I will absolutely take it. Nicholas right now is still in high school, and now that it's winter, he's doing a bunch of activities like cab skiing on Sunday, which is actually one of the illustrations in the book.

 

14:11

Stuff like that, just anything that we can, or anything that allows him to do the sports and activities that he once loved. That sounds really great. Now, just back to Nicholas for a moment, what sort of role did he have in the process of putting this book together?

 

14:33

We did want to get his approval, but he can only answer yes or no questions. So after it was written, we read out each page to him and asked him if it was correct. And each time he looked deep in thought and then said, yeah. There's also a page that mentions how he enjoys swimming and splashing his mom in the face. And so he laughed when we read that out to him. So I think we have his approval. That's good. Anything else to add?

 

15:02

to this podcast before we wrap it up? I just want to remind everyone that this is a free tool that anyone may use to teach about inclusions and intellectual disabilities. At the back, there is a discussion section for parents and teachers to use with their kids so that they can discuss the topic and think critically about it. Anyone is welcome to contact me for a digital copy and print or distribute it as they like.

 

15:27

You meant there's a mention in the back of the book about the Special Olympics BC. Now you talked about that a little bit earlier. Were they involved somehow in the production of the book as well?

 

15:37

Yeah, so Special Olympics BC runs a program called the Youth Engagement Project. So I was accepted as a volunteer to run my own self-led project with the goal of spreading the word on inclusion. So they gave us online training on how to run a project like budgeting and engaging stakeholders, stuff like that. And my work was a product of the Youth Engagement Project.

 

16:01

So can people find the PDF version through Special Olympics as well? Yes, definitely. So on Special Olympics BC's website, if you go to their youth engagement project page and go to the 2021 to 2022 projects, my name is in there and there is a link to the PDF version.

 

16:29

You've been listening to Developmental Disabilities Association's Encouraging Abilities podcast. Our guest today has been Veronica Kitzel, author and artist of a new book called His Name is Nicholas. The book is about including people with disabilities. It's available through the artist herself as well as online PDF versions for anybody interested in using it as a teacher's resource. It is free. To find out more, you can contact Veronica herself.

 

16:57

at veronikakitzel at gmail.com. That's Veronica with a K, last name, K-I-T-Z-U-L at gmail.com. Veronica, thank you for taking the time to chat with me today. Thank you so much for having me. We'll see you next time. I'm Evan Kelly.