World Down Syndrome Day

By Corey Slumkoski (and Martha Walls)

Please Note: Today’s blog post is more personal than historical.

Yesterday was my daughter’s sixth birthday. Today is World Down Syndrome Day. These two things are related.

Seven years ago I knew nothing about World Down Syndrome Day, and not much more about Down syndrome itself. That all changed in late 2012, when my colleague and wife, Martha Walls, and I received a prenatal diagnosis that our unborn child  had Down syndrome (we prefer the word “determination” to “diagnosis” these days – we don’t regard our daughter’s condition to be an illness). As historians, we immediately (or at least once the shock wore off) began to use our training to research this genetic condition. We learned that Down syndrome is caused by a trisomy, or triplication, of the 21st set of chromosomes. We learned that Down syndrome is the most common genetic condition, occurring in approximately 1 in 700 births. We learned that heart defects are fairly common in children born with Down syndrome. We learned that as recently as the 1960s – in Canada and here in our city, Halifax – babies born with Down syndrome were denied simple, life-saving surgeries on account of their extra chromosome. And we learned that the majority of families that get a prenatal determination of Down syndrome chose to terminate. Being strong supporters of the right to choose, we were, in those early days, not at all sure of how to proceed. Eventually, we concluded that we wanted to have this child.  After all, we’d already named her – Quinn Elizabeth – and we knew that we’d love and cherish her regardless of her chromosome count.  We also knew that we were financially able to care for a child with Down syndrome, and, as willing critics of state policies, we were in a position to be outspoken advocates for Quinn. On March 20, 2013, we finally got to meet her; the very next day we celebrated our first WDSD!

socks

Rockin’ our funky socks for World Down Syndrome Day. L-R: Martha Walls, Quinn Walls-Slumkoski, Corey Slumkoski

What does the story of our daughter have to do with Atlantic Canadian history or university teaching? Well, having a child with a disability alters how you view the academy. Look around your own campus. You will see very few people with disabilities, and even fewer with intellectual impairments. Recognizing this ourselves, Martha and I jumped at the opportunity to be involved on our campus at Mount Saint Vincent University with the MountAbility program. Modeled after the pioneering Axcess Acadia program at Acadia University in Wolfville, NS, MountAbility allows men and women whose physical or intellectual disabilities would typically preclude university-level study to attend university classes and partake in campus life. Students study according to a participatory audit. Working closely with faculty, students can opt to complete as much, or as little, of the assigned course work as they desire, and they receive feedback on submitted work from the instructor. At the end of their studies, they will have amassed a dossier of their completed work and comments, and will cross the convocation stage with other university graduates. Our program currently has five students enrolled, including one young man with Down syndrome who has embraced his studies and campus life; after running for student union, he was elected (in a landslide) as the Accessibility Rep on the Student’s Union. Martha and I are so very pleased to part of this program that opens university campuses to people who have been denied access to these spaces. We have seen first hand how this program not only enriches the lives of students with disabilities, but how it breaks down barriers between people of all abilities. It is our hope that our little program will promote a level of inclusion that will continue to shape the expectations and behaviours of Mount graduates out in the “real world.” It is hard for us to imagine a more significant measure of the social justice component of higher education.

Having a child with a disability also alters the way you view the past, and how you teach it. As historians, we were interested to learn the backstory of John Langdon Down, the English physician who, in 1862, first described the traits of the genetic condition that would bear his name. We learned that Down was, like so many medical professionals of his age, an ardent eugenicist, not at all interested in protecting or celebrating those with this syndrome. We also were excited by the dramatic and ironic turn taken by Down’s own history when, in 1905, his grandson and namesake was born with an extra chromosome on the 21st pair. John Langdon Down did not live to see his grandson, but one cannot help but wonder how the birth of this grandson might have shaped his valuation of those marked by this genetic condition? More importantly, our daughter’s Down syndrome has also profoundly shaped – and enriched – my teaching. While I have always valued as important the inclusion in course material of the lived experiences of marginalized groups, the immediacy of Down syndrome in my life has made me more conscious still of its importance. And it encourages me to widen the scope of “marginalized” to more fully include disability experiences, a focus that continues to be underrepresented in national and regional histories.

World Down Syndrome Day, which is recognized by the UN and occurs every March 21st (on 03-21, recalling the 3rd chromosome of the 21st pair) was initiated to raise awareness of this genetic condition, to celebrate difference, and to advocate for the rights of all people with disabilities. So today, on World Down Syndrome Day 2019, I encourage you all to “See the Ability!”

PS: My kid has more chromosomes than yours!


Corey Slumkoski and Martha Walls are Associate Professors in the Department of History at Mount Saint Vincent University. Quinn Walls-Slumkoski is a senior at the MSVU Child Study Centre daycare.

About The Acadiensis Blog

The Acadiensis Blog is a place for Atlantic Canadian historians to share their research with both a scholarly and general audience. We welcome submissions on all topics Atlantic Canadian. If you are interested in contributing to the blog, please contact Acadiensis Digital Communications Editor Corey Slumkoski at corey.slumkoski@msvu.ca.
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1 Response to World Down Syndrome Day

  1. Lee Ellen says:

    I heart this big time. Well done.

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