October is Down Syndrome Awareness Month. According to the dictionary, awareness is “knowledge or perception of a situation or a fact.” Nearly two decades into this journey, I’m still raising my own awareness about Down syndrome. I recently learned, for example, that the divorce rate for parents of children with Down syndrome is lower than that of the general population. And I learned that there’s a really large range of time when it is considered normal for kids with Down syndrome to meet developmental milestones.
Awareness can mean gaining knowledge. It can also mean action. Action can look like political pressure. Or it can look like education, whether that’s making sure schoolchildren understand something about Down syndrome or hosting medical and nursing students to give them a wider social context for this condition they might otherwise only know through a textbook.
But awareness isn’t just about information and action. It’s also about paying attention.
People with Down syndrome are easily overlooked or ignored. Penny experiences this regularly, when someone meets her and then promptly turns to me rather than assuming she can engage in conversation. She, like most of her peers with Down syndrome, is short and has small facial features and big round cheeks. She looks younger than she is, which again can lead others to ignore her or treat her dismissively. Even at our own dinner table, the rest of the family needs to consciously pause to welcome Penny’s perspective. She takes her time processing the world. Her responses come more slowly, which means they often get left behind.
Penny, and everyone else with Down syndrome, deserves attention for her own sake. The beautiful thing about offering attention, however, is that the act of attending to people who are easily overlooked can be transformative for all of us.
For me, paying attention to our daughter with Down syndrome for 18 years now has reshaped the way I see myself, see others, and see the world. She has invited me not only to see differently, but to be in this world differently.
To move from treating relationships as transactions to receiving them as gifts.
To move from individualism to community.
From jealousy and judgment to compassion and celebration.
From proving myself to being myself. From using others to caring for others.
It has been a gift to me to become aware of the fullness of life—in all its beauty and brokenness—for people with Down syndrome.
Down Syndrome Awareness Month might sound like a marketing gimmick. It’s really an invitation to reorient our lives around love.
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MORE WITH AMY JULIA:
- Down Syndrome Awareness Month 2024
- S8 E2 | What’s Normal? The Anthropology of Disability with Tom Pearson, PhD
- Workshop: Reimagining Family Life with Disability
- Free Resource: Missing Out on Beautiful: Growing Up With a Child With Down Syndrome
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