To know Krista Ewert – writer, advocate, photographer, and academic - is to know her daughter, Ella. Ella is an eight-year-old ball of energy. She takes ballet, is an active part of her class at school, socializes vivaciously, and lives her life captivated by curiosity.
Ella also has Down Syndrome.
This past March, as the global community marked World Down Syndrome Day, Krista launched a kickstarter campaign entitled This Is Ella . Launched to fund the publishing of a book Krista wrote for countless parents seeking a child-friendly way to promote inclusion, the campaign quickly took off, surpassing its original $8,000 goal to raise over $13,000.
Convivium sat down with Krista to learn about how Down Syndrome and her role as an advocate for inclusion and diversity has shaped her walk of faith.
Convivium: Every year, people around the globe mark World Down Syndrome Day. How has this day has taken on greater significance for you since becoming a parent?
Krista Ewert: When my daughter, Ella, was born, we were surprised to find out that she had Down syndrome. To many, a diagnosis of Down syndrome is incredibly scary. This fear, however, is often from a lack of knowledge about Down syndrome, and very little experience with individuals who have the condition. When Ella arrived I, like so many other parents, had no idea what a life with Down syndrome really looked like. All I knew was that Ella would have both physical and cognitive delays, potential health problems, and a shortened life expectancy.
What I did not know, however, was how full, beautiful and, quite frankly, normal Ella’s life would be. I did not realize that despite her challenges, Ella would have the potential to achieve many of the milestones her peers eventually would such as being surrounded by wonderful friends, graduating from high school or college, playing soccer, living on her own or having a job. World Down Syndrome Day is about helping people understand that individuals with Down syndrome are more the same than they are different and their achievements are worth celebrating!
Convivium: How does your faith play into the advocacy that you undertake on a daily basis to promote inclusion, diversity, and a greater understanding – particularly among parents and their children – about approaching difference with compassion?
Krista Ewert: We believe that Ella is a gift from God, as all of our children are, but the important lesson that God taught me through Ella is that our contribution to the world is not dependent on how our ability measures up against the rest of society. Within our communities, just as it is with the body of believers, each individual has something significant to contribute, and our diversity creates diverse contributions. One shade of blue on a canvas is lovely in and of itself, but how much more beautiful is a canvas filled with vibrant reds, serene greens, cool blues and vivacious purple. To each canvas in life, whether it be our families, our workplace, classroom, or church, we bring the colours of our personality, our abilities, and our talents. As I have worked to ensure Ella’s contributions are not only recognized, but welcomed in her community, I have also become acutely aware of how I judge other’s contributions in my own life.
C: Are there Canadians of faith you admire who have done work, as an extension of theology, in the area of raising awareness in regards to diversity, inclusion, and disability?
KE: No. I guess I need to work on filling that void! I will highlight notable Asian American author Amos Yong however. Yong was the son of a pastor in Malaysia, and grew up with a brother who had Down syndrome. He is now a Professor of Theology at Fuller Theological Seminary, and author of Theology and Down Syndrome: Reimaging Disability in Late Modernity (2007). This publication gives historical and theological perspective to the way that Christians have viewed disabilities over time and how we view disabilities in light of the Kingdom. Because disabilities cause a hiccup in our understanding of God’s redemptive work, Yong calls for a rethinking of not only our ecclesiology but our soteriology as well.
C: What work is undertaken within the faith community to walk alongside families for whom disability shapes daily life?
KE: Thankfully, our views of individuals with disabilities are changing. More and more caregivers understand that the best place for their loved one is not in an institution. As a result, we are seeing more education aimed at re-thinking the way we “do church” in order to better serve and include individuals of all abilities. The Umbrella Conference at Centre Street Church does just that, as does Christian Horizons in Ontario. The challenge, however, is to move beyond the integration of people with disabilities to inclusion. The difference is that integration allows individuals to be a part of a group, but inclusion gives them belonging and recognizes the beautifully diverse contributions individuals with disabilities make to a community.
C: You’ve shared over the years how your journey of becoming Ella’s mother and your efforts to educate yourself about Down Syndrome have shaped you both personally and spiritually. Can you share that journey with our readers?
KE: I am an academic at heart. Research has always been my first line of defense. Naturally, when Ella was born, I gathered up as many books as I could on the topic of Down syndrome. This was a horrible idea. The books I read told me the science behind Down syndrome, and the statistics surrounding the health of individuals with Down syndrome. In truth, this only cast a shadow over the joy of having a new baby. I quickly put the academic books away and turned instead to memoires such as Amy Julia Becker’s book, A Good and Perfect Gift . I found that the better education was in reading about the experience of other parents: their challenges and their joys. In a way, I believe God gave us - not just myself, but society in general - individuals who don’t quite fit the mold to shake up our perspectives, grow our faith and trust Him more. They are, after all, also made in the image of God. His purpose for their life is no less than for you or for myself.
To learn more about little Ella or to follow along with the This Is Ella initiative, visit: https://www.kickstarter.com/projects/8716905/this-is-ella
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