Down Syndrome isn’t Rare, but it sure feels familiar.
A collection DODs Days attendees we interviewed: a dad/DOD and his kid, a woman in a DODs baseball cap, a grandpa and his grandson, a Minnesota Viking player, a mom, a community leader, 2 women from Highland friendship club, a dad/DOD, a mom and her son, another DOD.
Down Syndrome is not a rare condition. So what was Rarely Familiar doing at DODs (Dads of Down Syndrome) Day? Turns out, we have a whole lot in common. Back in June, we packed up our microphones and headed to DODs Day, an event created by Dads of Down Syndrome to bring families together around community, connection and advocacy.
And because it was LOUD, and because accessibility is kind of our thing, we turned our accessible van into a makeshift recording studio. Throughout the day, we invited people inside. Moms, Dads, Grandparents, advocates and community partners, and yes, even a Minnesota Vikings player!
We asked them two pretty simple questions:
What is it like to love someone with Down syndrome?
What does belonging mean to you?
The answers are the heart of this eight-minute video.
There are no experts explaining Down Syndrome, no statistics, no list of challenges or accomplishments. Just people talking about love, family, expectations, community, disability and what happens when someone you love changes the way you see the world. And while Down Syndrome itself isn't rare, so much of what we heard felt deeply familiar to us. Because regardless of the diagnosis, many of our families know what it feels like to suddenly enter a community we never expected to join. We know the strange mix of becoming an expert in something we once knew nothing about. We know what it means to advocate for access, inclusion and opportunity and the importance of finding other parents who don't need the backstory. We know that our kids are so much more than the medical language used to describe them. And we know how powerful it is to walk into a space and realize: These are my people.
THAT is belonging.
One of the things we hope to do through Rarely Familiar is build more bridges across the disability, rare disease and medical-complexity communities. Our diagnoses may be different, our children may need different supports, our families' stories will never be identical, but there is a lot we can learn from one another. We share the experience of loving people who sometimes move through a world that wasn't designed with them in mind. We share the work of changing that world. And, hopefully, we share plenty of joy along the way.
So take eight minutes and meet some of the people we met at DODs Day. Listen to the moms, dads and grandparents. Listen to the laughter, the stories. Listen to the different ways people describe love and belonging. You may not know someone with Down Syndrome, you may not even consider yourself part of the disability community, but we have a feeling something in these conversations will feel familiar.
Different diagnoses. Different families. A whole lot of shared humanity.
That sounds pretty Rarely Familiar to us.