We are approaching the end of Down syndrome awareness month. It always sneaks up on me. It’s both an arbitrary designation and also something that works to focus attention on what it means to be a person with Down syndrome and why it matters.
As we come to the close of this month, I decided to ask Penny to reflect on the significance of this time and offer her perspective on having Down syndrome. Her favorite way to tell me what she thinks is for me to write her questions via Google doc and for her to respond, so here is our back and forth. The questions in bold are from me. The answers in italics are from her:
Penny, October is Down syndrome Awareness Month, so I wanted to check in with you about that. Do you think it’s a good idea to have a whole month dedicated to raising awareness about Down syndrome? Why or why not?
It is good for October to acknowledge it, but I don’t think it should be the whole month. I have lived with it since I was born, so I know what it’s like. Throughout every day and every month. The outcome here is it can be acknowledged in October, but my personal preference is for it to not last the whole month.
What are some things you want people to know about Down syndrome?
You are not alone in it. You may think you are, but you’re really not. It can be kinda cool. Not everyone thinks it’s cool, but think about it you can be more physically flexible than other people. You may think you might not have friends, but make some, I know you can.
Are there any things that people don’t understand about Down syndrome that you wish they would?
The only thing I wish people would understand is you have a right to speak up for yourself.
What has been the hardest thing for you about having Down syndrome?
The hardest thing so far is finding the people who matter to me the most. But I have done that, and that made a difference.
Is there anything great about having Down syndrome?
I wouldn’t have discovered a specific book if it wasn’t great. I had the chance to read a book called Special, and one of the main characters has Down syndrome. That book made having Down syndrome great. (Note–more on this book later in the Substack…)
You and I have talked before about how you don’t necessarily see having Down syndrome as a big deal or the defining feature of your life. Do you think it’s an important piece of information about you?
I do think it’s important for medical and health purposes, but in my social status it doesn’t define me.
What are some other things about you that you want other people to know?
I live a pretty cool life. I have grown up living on boarding school campuses. So I get to know the students pretty well. A fun fact about me that most people don’t know is I have been dancing since I was 2.
And finally, for a new mom or dad out there who just had a baby with Down syndrome, what would you want them to know?
My advice is simple: they will have friends one day. You don’t need to worry about that.
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Amy Julia Becker desires to challenge assumptions about the good life, proclaim the inherent belovedness of every human being, and help us envision and build a world of belonging where everyone matters. Amy Julia invites people to reimagine the good life through her writing and speaking on disability, faith, and culture. She is the author of several books, including To Be Made Well, White Picket Fences, Small Talk, and A Good and Perfect Gift. She is a guest opinion writer for national publications and hosts two podcasts: Take the Next Step and Reimagining the Good Life. Becker is a graduate of Princeton University and Princeton Theological Seminary (MDiv). She is a member of the Disability Ministry Network and the Alliance for Disability Justice and Ethics in Reproductive Genetics. She lives with her husband and their three children in western Connecticut.
