Connecting Disability to … Parenting and compassionAuthored on October 20, 2021
"For many parents, their first significant experience with disability comes when they find out their child has one. Shannon Reaume’s story is different: both she and her son have the same medical condition, central congenital hypoventilation syndrome (CCHS).
In this conversation, Shannon and Meagan talk about how Shannon’s disability impacted her journey to motherhood, what it’s like to share a diagnosis with your child and what the experience is teaching her about having compassion for her own parents. If you’re considering how to be a disabled parent, wondering what your life will look like with your child’s disability, or reflecting on what your parents taught you about living with a disability–there’s something for you in this conversation.
Shannon Reaume is a registered social worker and a family advisor on multiple committees and working groups for McMaster Children's Hospital in Hamilton, Ontario, Critical Care Services Ontario, and the Provincial Council of Maternal and Child Health. She’s also a Ph.D candidate at the School of Public Health Sciences in the University of Waterloo where she is a researcher at the ARCH Lab, which stands for Advancing Research in Children’s Health. She was a recipient of the 2021 Holly Bartlett Memorial Award from the National Educational Association of Students with Disabilities. Shannon is passionate about helping children and families live healthy lives with disabilities. She lives with her husband and two children in Elora, Ontario.
If you want to learn more about CCHS or donate to CCHS research, go to www.cchsnetwork.org. International CCHS Day is November 13.
If you want to hear how Meagan first met Shannon, you can check out this article from July 2021 about homecare for medically fragile children in Ontario during the first few months of COVID-19 lockdowns: https://www.tvo.org/article/were-forgotten-families-call-on-the-governm….
And if you feel the urge to look at cute teddy bears–and lots of accessories!– his is the company that Shannon’s son got his teddy bear through: www.buildabear.com. "
Connecting Disability to...Storytelling and communityAuthored on September 24, 2021
On the first episode of “Connecting Disability,” Meagan sat down with the journalist who first showed her how experiences with disability can lead to in-depth, thoughtful journalism – and help us consider how one person’s disability can impact several people in related, different ways.
In 2009, Globe and Mail feature writer Ian Brown published The Boy in the Moon, a memoir about his experiences with his son, Walker, who was born with a rare genetic disorder called cardiofaciocutaneous syndrome. The book vividly describes the physical routines of Walker’s life - baths, diaper changes, therapies – and his father’s reactions to them. It also made Meagan realize there can be good journalism about disability that is inspired by personal experiences, but goes beyond them.
In this conversation, Ian and Meagan discuss the power of writing about disability, the difficulty of doing that well, and why vulnerability helps us connect.
Meagan and Ian were both nominated for Digital Publishing Awards in 2021 for writing about disability.
You can read Ian’s piece, published in the Globe and Mail here: https://www.theglobeandmail.com/canada/article-two-metres-and-a-world-a…. (It got a silver award in the feature article category.) You can read Meagan’s personal essay about the late author Jean Little, published in the Walrus and featured on AMI-audio’s “Voices of the Walrus” here: https://thewalrus.ca/the-author-who-shaped-the-way-we-represent-disabil…. (It didn’t place, but gave Meagan an excuse to get dressed up in the middle of the day to attend a virtual award show.) That link will also take you to the recording.
You can check out Ian Brown’s author page at the Globe and Mail here: https://www.theglobeandmail.com/authors/ian-brown/ and follow him on Twitter @BrownoftheGlobe.