It’s the middle of October, Down Syndrome Awareness Month, and I have done nothing to acknowledge this fact. We didn’t walk in a Buddy Walk. We haven’t posted stories about Penny’s life on social media. We haven’t visited a local school to debunk some of the myths around Down syndrome. In the past, I’ve done all of those things. I think they are all good things to do. So why have I been silent on this topic?
Some of the silence has to do with busyness. Some of it has to do with feeling like I don’t have more to say. I don’t want to do anything to defend our daughter’s right to exist. I don’t want to justify her presence among us through her accomplishments. I don’t want to betray her privacy by telling you about the hard realities of life with a disability in a world built for typical people.
And yet I do want my friends and neighbors and fellow humans to know that the world is a better place when people with Down syndrome belong here. I do want to celebrate the ways my own life has been enriched and expanded as a result of people with Down syndrome, and especially Penny.
I wrote last week about how I wanted to rid the walls of our household of loneliness. Loneliness is high on the list of concerns for adults with disabilities. Not physical pain. Not wishing their bodies or minds are different. Just the deep, basic, human need for companionship and relationships of mutual care.
So, last week, we went to visit a bookstore that employs people with disabilities, with the thought that maybe Penny could work there one day.
We walked in, and no one said hello. We stayed for about 20 minutes and walked out as anonymously as we had walked in. But then, the next day, I went to an Open House at Penny’s school. Two of her teachers gushed about the slideshow Penny had been working on and the way she had stepped up to help a new student in their class. Later, the mother of another student approached to let me know how much her son enjoys time with Penny. We exchanged numbers so they can get together for bowling, or a trip to the mall, or a meal, sometime this fall.
So here, in honor of Down Syndrome Awareness Month, I want to put out a plea for companionship and friendship. Acknowledging the person with Down syndrome who goes to your church. Eating a meal with the student with Down syndrome at your school. Inviting them to a shared activity. Looking for opportunities to learn from each other.
This week on the Take the Next Step podcast, I’m talking with Erik Carter about his work on the Ten Dimensions of Belonging and how the small steps we take toward inclusion and belonging can transform entire communities. I hope you’ll listen and share his wisdom with others and that we all will put it into practice in our own lives.
If Down Syndrome Awareness Month succeeds in raising awareness about the goodness inherent within the lives of people with Down syndrome, we won’t end up with greater scientific knowledge of chromosome counts and genetic expression. We will end up with a world of belonging that is better for us all.
Take the Next Step podcast
Disability & Belonging: “We Aren’t Us Without You” with Erik Carter, PhD
Apple • Spotify • YouTube • More
“Belonging is not a special need. It is a universal need.”
“Flourishing is creating a world where people with and without disabilities can live and learn and work and worship together as one.”
“You know you belong when a group says, we aren’t us without you.”
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