Happy World Down Syndrome Day! Our daughter Penny is 18, and we join thousands of other people around the globe who want to raise awareness about Down syndrome today.
First, we want to raise awareness that life with Down syndrome can be full, flourishing, and good. It can involve meaningful contributions to society, participation in community, friendships, romance, and fun. In Penny’s case, life includes dance class and creative writing and working at Panera and summer camp and applying to college and dreaming about living in an apartment with friends someday.
Second, we want to raise awareness that people with Down syndrome still face bigotry and injustice. This comes in small ways—the waiter who doesn’t look Penny in the eye and asks me what she wants to order without acknowledging her presence, the teachers with low expectations. And it comes in large ways that we mostly don’t experience. I’m thinking of Penny’s friend Rachel, who is languishing in a school system that has no plan or imagination for kids with intellectual disabilities over the age of 18. I’m thinking of my friends who have needed legal advocates and lawsuits to forge a path of inclusion in schools. I’m thinking of the countless young adults with Down syndrome who want to work and cannot get hired.
If we actually believed the belovedness of every human being, we would have eyes to see the value of every individual. And if we assumed possibility instead of deficiency, we would find ways to engage every individual in the fabric of our society as meaningful contributors worthy of attention and care.
MORE WITH AMY JULIA:
- Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny
- Free Resource: Missing Out on Beautiful: Growing Up With a Child With Down Syndrome
- Penny’s Final Night of Cheerleading
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