“I don’t think it is good for my head or my heart to be on social media this month.” I told my husband after scrolling through Instagram and seeing all the World Down Syndrome Day posts.
For people who know me the statement may seem a bit backwards. I am Heather Avis, the founder of The Lucky Few. For over a decade I’ve been an active voice in the Down Syndrome advocacy space. I’ve authored four books, spoken all over the nation, worked in collaboration with major global brands, hosted the number one Down syndrome podcast and started a foundation, all in the name of Down syndrome advocacy. For over a decade I’ve been showing up on social media, especially during the month of March, to shout the worth of my kids with Down syndrome, of all people with Down syndrome. I love Down syndrome and I love the Down syndrome community.
14 years ago I entered the Down syndrome advocacy space and during these past 14 years, with advances in technology and social media as part of our daily lives, advocating for Down syndrome has spread across the globe. With videos and stories being shared about people with Down syndrome going to college, starting businesses, being included in their community schools, completing IronMan races, acting in major television shows and films, modeling for global brands, speaking on large stages and lobbying in our country’s capital, just to name a few, a new kind of story about Down syndrome is being told. A story communicating to both active and passive consumers “no need to worry or feel so sad about Down syndrome because look at everything a person with Down syndrome can do.”
I get it, this need to prove that people with Down syndrome can. It wasn’t that long ago when a new Down syndrome diagnosis meant your child will never be able to know you as their mother or father so what is best is placement in an institution. It was even less time ago when people with Down syndrome were not given a free and appropriate public education. Even with so many advancements made for people with Down syndrome, sometimes I fear we’ve replaced institutionalization with terminating pregnancies with a positive in-utero diagnosis. And a person with Down syndrome’s right to a free and appropriate public education has become a fight for instilling inclusive practices. The rejection of a Down syndrome diagnosis is palpable for those of us who love a person with Down syndrome. Over the past few decades as we’ve worked to prove to the world people with Down syndrome are worthy of life, of an equitable space and of celebration, we’ve done so by showing the world what people with Down syndrome can do. And amazing organizations, like Ruby’s Rainbow, led by my dear friend Liz Plachta, have been created to dream big and celebrate the incredible capacity that so many people with Down syndrome have to pursue their goals. Of course we are proud of them. Of course we applaud the people with Down syndrome who are showing the world what they can achieve. But if that becomes the only story we tell, what message are we actually spreading?
While we’ve been clawing our way out of a harmful and deadly narrative, we’ve begun to tell, and expect, a narrative riddled with a different kind of harm. A narrative in which we communicate: “Look! Down syndrome isn’t bad because look what people with Down syndrome can do!” We’ve changed the narrative yet somehow communicate the same harmful messaging, replacing, “Down syndrome is bad because people with Down syndrome are unable to do A-Z.” with, “Down syndrome is good because people with Down syndrome are able to do A-Z.” It’s the same story told through a different lens. We’ve traded one harmful narrative for another, communicating loud and clear: “there is a best way to have Down syndrome and that way is to be more like people without Down syndrome.”
Yikes!
The harm around this kind of narrative is it leaves those with Down syndrome who can’t read, aren’t walking or need help toileting, not only constantly faced with the need to be more and do better, but it communicates to them and to everyone else that as they are, they are not worthy of a space in this world.
Our very own Down syndrome community is telling a narrative in which ableism is perpetuated. Over the years I’ve learned that loving a person with Down syndrome does not automatically undo the ableism each of us carry. Undoing a harmful structure, one on which every system we function in was built upon, requires of us an undoing. My kids with Down syndrome have been my invitation into this undoing. But like all invitations, I had to accept it.
May this World Down Syndrome Day be that invitation for us. Yes, this day is an invitation to celebrate and invest in the amazing accomplishments for people with Down syndrome and like my girl Liz from Ruby’s Rainbow is doing, to always dream big! And may it also be an invitation for us to truly restore the Down syndrome narrative by telling the whole Down syndrome story. A true story in which we see people with Down syndrome as worthy. Period. Full stop. It’s a story of people with Down syndrome being worthy of a space in our families, schools, communities and world because they have breath in their lungs and a heart beating in their chest. A story that tells us people with Down syndrome, just as they are, are worthy of a family, friendship, love, community, education, dreams, pursuit of dreams, to be human. Not because of what they can do, but because they are. It’s a story where everyone with Down syndrome can be celebrated and embraced.
A few blog posts ago I asked the question, “What If My Kid With Down Syndrome Can’t?” And I shared a magical moment with my daughter Macyn. A moment full of love and magic not because of anything she was doing, but because of who she is. A spectacularly, fully human, worthy person, with Down syndrome! Her existence is one that tells this story. I consider myself the luckiest gal I know to have accepted her invitation as side by side we live this story out.