[This article originally published on Bergen County Moms, October 6, 2020.]
This week, New Jersey students participated in their schools’ programming for the Week of Respect. Each grade level tackled concepts of acceptance in age-appropriate ways, renewing the immense responsibility we have as parents to foster an understanding of and compassion for differences across the boundaries of race, ethnicity, socioeconomics, and disability.
Coinciding with the Week of Respect is Down Syndrome Awareness Month, a cause nearly unavoidable on any social media timeline throughout October. Cute little people abound, holding up posters written by their parents that dispel mistruths about Down syndrome. Teens and adults, often deemed self-advocates, are sharing personal stories to illustrate why their lives are worth living and how much they enjoy participating in everyday activities, including education and employment. Everyone touched by Down syndrome is doing their best this month to change hearts and to prove they have the right to exist in their communities.
There is an important distinction to be made between Down syndrome as a medical diagnosis and Down syndrome as a disability. Down syndrome is a medical condition called trisomy 21, where instead of having the standard two 21st chromosomes, there are three. This is very rarely inherited and almost always a random event when the first cells split at conception.
In contrast, Down syndrome as a disability comes down to access. Without access, there is no chance at equality. Districts and businesses have a choice to provide access—which some families are familiar with as accommodations or modifications—or we can choose to keep doors closed. But the relationship remains constant: The more access we provide, the less a person may be affected by their disability.
After 30 years of living without disability, I now understand the barriers that exist, as well as the beautiful willingness of friends and neighbors to open their hearts and listen. A quote from one of our favorite children’s books, We’re All Wonders, reads, “I know I can’t change the way I look. But maybe, just maybe, people can change the way they see.”
Our work as parents never ends, and our children can grow and stretch their hearts and minds as wide as we will let them. Easy things we can do include watching The Peanut Butter Falcon movie with our families or reading We’re All Wonders or The Crayon Box That Talked with our little ones at the table during afternoon snack. We all have something to learn from each other, and our family understands deeply that the road goes both ways.
With that, we wish you a very happy Down Syndrome Awareness Month! We advocate not because we want to, but because we need to. We celebrate because we can. Thank you for celebrating with us this year!