Author Krista Ewert Is Writing (and Fighting) for a More Inclusive Future
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Sending your child off to school is an incredibly nerve-wracking experience (just ask any parent). That anxiousness is amplified many times over if your child has a cognitive delay or other condition that makes them stand out from their peers.
This is the situation that Vancouver-based Krista Ewert found herself in when preparing her daughter, Ella, for her first days of school. A vivacious, fun-loving little girl, Ella also just so happens to have Down syndrome. Although wanting to participate and be accepted like anyone else, Ella possessed a different set of needs and communication challenges than many of the other students in her class. With the goal of helping both Ella’s teachers and classmates understand and celebrate her differences prior to the start of school, Krista started writing.
Just a few short years and a successful crowdfunding campaign later, the picture book This is Ella was published in 2017. Featuring beautiful watercolour illustrations of Ella by artist and family friend Celia Marie Baker, the book filled a gap in children’s literature by engaging and educating readers about what makes Ella (and all children with disabilities, by extension) more similar than different. Today, countless families and classes around the world know Ella, as the book has emerged as a primary resource for advocacy organizations and parents of children with Down syndrome entering school for the first time.
As part of our 15th anniversary celebration, we caught up with Krista to learn more about the organic making and growth of This is Ella. We also discuss the roles crowdfunding and word of mouth played in spreading its inclusive message, how Krista continues to fight for the rights of people like Ella in British Columbia, and the book project she’s hoping to tackle next.
Let’s start at the beginning of your author journey: how did This is Ella come to be?
This is Ella originated when I was sending [the real life] Ella to kindergarten. I was looking for a way to share some of Ella’s wonderful personality, similarities, and differences with her class in a way that they would understand. I wrote three publications when she went into kindergarten: a story for her classmates; an explanation for parents so that, if their kids came home with questions, they would be prepared to answer them; and a cheat sheet for her teacher with tips and tricks for how to communicate with Ella. My daughter was nonverbal when she went into kindergarten, although she did know sign language. So, there were some things that were really important for her teacher to know in order for Ella and the teacher to succeed.
We have a very close-knit Down syndrome community in Canada; after I gave it to her kindergarten class, I would just keep handing it out [to other parents] year after year. Finally, I decided to go ahead and put it into a proper book form because it’s best shared as a hardcover picture book.
When did you realize this story might have a wider audience than Ella’s kindergarten class?
It was the year after Ella entered kindergarten. That year, other parents of children with Down syndrome would ask, “do you have anything that is helpful?”
It’s a terrifying moment when you send your kid off to kindergarten — especially when they have any sort of communication needs or maybe aren’t going to be understood like other children. It’s really terrifying [as a parent], because you don’t know what's going to happen. People are always looking for different resources, and my book would often be offered. Year after year, even to this day, people will be looking for resources and other people will mention This is Ella if they’ve heard about it. So it just kind of keeps going.
Did you ever think you would publish a book before you embarked on this project?
I don’t think I did, but I’ve always enjoyed writing. Actually, when Ella was born, I wrote our story — not her birth story per se, but just a bit of an explanation. We lived in a small town and my husband’s in church ministry, so word spread quickly about Ella’s birth. I wanted a way to communicate en masse that Ella has Down syndrome and share kind of where we’re at. I already had a blog, so I wrote that and published it. I was really surprised because it got all this traction; as I say, the Down syndrome community is quite tight and incredibly welcoming. Anytime we hear of somebody who’s had a child with Down syndrome, there’s usually this whole swarm of people that just go to say congratulations — because, quite frankly, that’s not the response you usually get.
I literally had somebody start crying in front of me in the post office just saying how sorry they were. I’m like, “wait a minute, I just had a baby. This is supposed to be a happy time.” The Down syndrome community is really good at just flocking to people and saying, “congratulations, you are so lucky that you had this child.” My blog got quite a bit of traction in the first couple years of her life because I would write about different challenges and victories that we would experience as her parents. While not a book per se, I did have a blog, and I did love writing (and still do).
Since being published in 2017, This is Ella has continued to do incredibly well. What is contributing to the longevity of this book?
When I published the book in 2017, there were very few picture books that had characters with Down syndrome. That was a bit of a niche market to begin with. I’m happy to say that there’s quite a few now, but for those first four or so years, there were really not a whole lot. People were constantly looking for a resource to be able to share about diversity and difference.
I think it was a combination of things. Number one: I got a really great start. I did a Kickstarter campaign to raise the money to publish the book, which spread word really quickly. I was able to raise $13,000 with the Kickstarter; just as you advise other authors who are wondering how to be able to do that, I did my research, found out what makes a good crowdfunding campaign, followed the steps, and it took off.
I also connected with the right kind of people. I was heavily involved in advocacy, and my best customer is an organization in the UK called Positive About Down Syndrome. They distribute welcome packages to new parents, but they also distribute packages to preschools and primary schools that help the schools be inclusive. I just order the books and have them sent [directly] to them, and I give them to PADS at cost. Because really, it was never about making money — it was always about just helping everyone to be inclusive. So relationships with key organizations that support Down syndrome was another huge factor.
From a little bit more of a personal perspective, I think the way the book is written is really helpful. There are other books out there that have characters with Down syndrome, but I wouldn’t say all of them are super helpful. This is Ella is written for kids, and whenever I read it in front of a class, hands just shoot up all the time. It’s question-based. It’s interactive. It’s asking the kids: do you have a bike? What colour is your bike? What colour are your eyes? And so it’s really helping them get their minds going and engaging with the content.
Can you speak a bit more about your advocacy work? Do the causes you support align with the mission you are on with This is Ella?
I currently sit on the board of Down Syndrome BC. One big problem that we have, especially in BC, is that we don’t have individualized funding for children with Down syndrome. For example, just to bring it to a personal level, I do not get any additional funding to support Ella. I get the Canadian Disability Tax Credit, but outside of that, I pay for all of her speech therapy out of my pocket. Any additional support that she needs — from pull-ups to adaptive equipment — I have to pay for that all myself. We really have some funding gaps in Canada for children with Down syndrome, unlike children with autism who qualify for quite a bit of funding. And that’s because those parents went through the Supreme Court. There was a class action suit that was filed by parents [of children with autism]. We haven’t had that as a community for kids with Down syndrome, so we’re still advocating hard for that. And it needs to happen on a provincial level.
Inclusive education has probably been my primary platform. When I launched the book, I was living in Edmonton, and I had a very fulfilling advocacy journey there because I lived in the same riding as Rachel Notley, who was the premier of Alberta at the time. And I knew that she had a son with Autism Spectrum Disorder who went to the same school that Ella did. Before we moved to Edmonton, Ella was in French immersion in Vancouver; when we moved to Edmonton, they wouldn’t take her in French immersion in the Catholic school or in the catchment school where they had French immersion.
We enrolled her in our neighbourhood English catchment school; she had to drop the French, but they still didn’t even want her there. They tried to get me to put her into a segregated school. When I told the principal that I needed adequate support for my daughter in this neighbourhood school, she said, “well, we’re really going to have to watch our photocopying costs.” That right there just launched me into an inclusive education battle.
I reached out to Rachel — by putting a letter in her mailbox — and then I chased her down at the dry cleaners and said, “I’d love to just sit down with you. I wish we had time to just have a coffee together and talk parent to parent about our challenges.” One thing led to another, and I was able to actually form a parent action group and sit with the Minister of Education to inform them on inclusive education and specifically speak from a parent’s perspective about what we need for our kids. That was incredibly fulfilling. I wish that I’d had the same success in BC, but it works a little differently [here].
Wherever I go, I always continue to try and fight for the rights of people like my daughter who don’t have the language to be able to advocate for themselves in a way that’s going to resonate with government officials and schools specifically.
What does Ella think of the book?
She was so excited about it. We did a little book tour after it was published. We visited a couple of schools in BC, and we also went down to Washington and did some book readings at a bookstore and a cafe. And she came with me the whole time and would sign her books. And every time she sees it, she’s like, “that’s me!” So she really loved it.
I have to ask you about the process of creating these beautiful watercolour illustrations. How did you connect with Celia Marie Baker and what was it like working with her?
Celia and I went to college together — our husbands were actually roommates, and that’s how I met her.
I just loved her artwork, so I approached her and asked her if she would illustrate it for me, and she said yes. She already knew Ella, and that was a real advantage because she had already seen her in action. Our families would hang out together, so she knew how to be able to depict Ella in fun and natural ways. I sent her the manuscript; she’d pull out different things and send me drafts and sketches. It was a really fun process.
What has been the response to This is Ella from those who have been touched by your message?
There’s two responses that I love the most.
One is from new parents because — in quite a few places off and on over the last six years — it will be included in new parent packages. Something the Down syndrome community loves to do is, when a parent has a child, we catch wind of it and send them a welcome basket that has a book about Down syndrome. It has toys and maybe something for the parents. This is Ella has been included in those packages from time to time, and I think it’s just so encouraging to be able to shed a positive light on the birth of a child who may not have received a positive welcome from the people around them. I love being part of that welcome through the book.
The other one I love is when I get an email to say, “my daughter also has pink glasses and she loves this book.” They can see themselves in Ella, and that is always really fun.
What are you most proud of with this project?
I am glad that Ella can be a positive force in the world. I came about the book very organically. It wasn’t like I set out and was like, “I’m going to publish a book. Here we go.” It was a very organic process and so I’m just really glad that for a time Ella could be that role model for so many other kids with Down syndrome or parents so that they could say, “oh, this is a blessing. This is a positive thing.”
I am proud that it is so engaging for kids, and it’s not just telling them something; it’s actually taking time to listen to them, which is hugely important.
If people only take one thing away from This is Ella, what do you hope that is?
We’re all different, and there is beauty in that diversity. We all come with a gift and a need for any community, school, church, or club that we’re a part of. How can we [better] open our eyes to the contributions that others make when they might not be the contributions we’re used to seeing?
We’re celebrating 15 years in the publishing industry, and look forward to at least 15 more. What do you hope the future brings for Krista Ewert and Ella — in writing or otherwise?
Ella is 14 now, so she’s a teenager. Our next big thing for her is to really help her to become an adult in a safe community where she can flourish in independence and be part of that community. So that’s our hopes and dreams for Ella.
As for writing, I was just talking to my son about this. I have a 16-year-old son — he’s very artistic and ambitious and artsy. I was talking to him the other day about how there’s still this need now for the next level [of books like This is Ella]. There’s lots of picture books with characters with Down syndrome now, and there’s a few books for older kids. We’re missing that in-between.
The thing about kids with Down syndrome is they do experience learning challenges. I know very few who don’t. And so Ella is more in that early reader stage — what would typically be considered a Grade 2 to 3 reading level — where you’ve got books that have illustrations and then a story with chapters. I was talking to my son and saying that if he wants a project, let’s write a book about a character with Down syndrome that has more mature content at a reading level that’s accessible for those at that early reader level. That’s the next area to tackle.
