DOWN SYNDROME AWARENESS MONTH.
October is Down Syndrome Awareness Month; and as a dutiful dad and photographer, I hauled a reluctant teenage daughter in front of my camera for a quick photo session to commemorate it. It’s always a give-and-take between Julia and me – she poses, I direct, she adjusts, and we typically walk away with something worthwhile.
We were over 40 frames in when that familiar and satisfying moment of “getting the shot” finally happened. One of my favorite photographers of history, Henri Cartier-Bresson, calls it the Decisive Moment, describing the “exact instant when a photographer captures an event, freezing it in a frame where form, content, and emotion are perfectly balanced.”
I was thunderstruck. Looking at that image – the hands and eyes especially – still takes me down a “rabbit hole” of emotion, wanting to know our 15-year-old daughter’s mindset in a new season of her life.
As I looked into the soulful eyes of the girl in that photo, considered the life she’s living with all the attendant joys and frustrations, I became a little less of a fan of Down Syndrome Awareness Month.
AWARENESS.
“Awareness” is a flimsy term that doesn’t ask a lot of us. Anyone who follows me on social media is aware of her and some of the life she lives. In the end, Julia needs far more than awareness as she makes her way through the minefield of high school socialization.
Consider a photo I took a few weeks ago of the goings on in the bleachers at a recent football game, and ask yourself a question:
Who in this picture is aware of Julia and who is engaging with her?
ENGAGEMENT.
After chatting with Julia for a few minutes, that boy moved on and was eventually replaced by someone else who sauntered by and sat down with her. A simple act of turning aside – an easy deposit of kindness.
But for the parent of a kid with special needs trying to find friends despite their increasingly divergent developmental journeys, it’s 24-karat gold. Our hearts were refreshed as we witnessed the simple interaction between Julia and that student.
Julia longs for a community committed to taking a scary but soul-filling step through awareness and into engagement. Why? Because it is the beginning of a journey that is life-giving for everyone.
Engagement sets aside our personal agendas and dares to enter the world of another. That in itself is an utterly counterintuitive move in a culture that demands personal achievement and continuous improvement.
It’s even better when that person has nothing of immediate value to offer back.
Engagement gives us the chance to recognize the legitimacy of that person’s world and the intrinsic value of their perspective – even if we don’t totally understand it. It sweeps aside worldly pecking order of strength and achievement for something closer to God’s intention for humanity. And it’s just the beginning.
INCLUSION.
Beyond engagement is Inclusion, where an invitation is extended to that person to enter our world. It takes a little more commitment. It’s slowing down and making space and maybe even re-working the “rules of the game” so that others can “get in the game” and taste the exhilaration of shared experiences we take for granted.
Julia got a sample of inclusion over homecoming week where the football team let her and some of her pals with special needs run a play during the halftime of an exhibition game.
Any progress along the continuum from awareness to inclusion makes the whole world better. But the peril remains to slip back into comfortable rhythms of self-promotion (and self-congratulatory pride) once the conversation on the bleachers or the exhibition football game is over.
BELONGING.
The true adventure happens when we decide that others are more important than us and we choose belonging, seeing even personal inconveniences and disruptions as part of the adventure that a loving God has for us to grow further into our better selves.
In belonging, our worlds are intentionally and collaboratively merged in the real give-and-take of life together as co-equal stakeholders. This is where life flourishes not merely for the privileged – but for all. Belonging lets a person bring their full self, knowing that they are valued and wanted and will join everyone in the journey toward growth.
Much of God’s redemptive work in this broken, divided world is to peel back our carefully constructed layers of self-protection and comfort, opening us up to more of the richness of life He has always intended for us.
The reality is that we – regardless of upbringing, skin color, or myriad other genetic or social markers – belong to each other.
It was described in detail by the first-century church planter Paul in his letter to a community that had become riven with division, exclusion and one-upmanship. Relating life together to a human body, he offered a weighty challenge:
In God’s marvelous economy, the people least expected to “move the species forward” are the ones, in the end, most vital to the survival of the species.
How are Julia and folks like her indispensable to us? How are they vital to our humanity?
If we take that brave journey from awareness to engagement to inclusion, and finally to belonging, a profound reward awaits us along the way. By setting aside personal agendas – by hitting “pause” on our ultimately useless striving, we will occasionally touch the wide, open pasture of self-forgetfulness.
It’s an admittedly strange space to live in, but Jesus himself said that by holding our own dreams more and more loosely and giving more of ourselves away, we gain a taste of the real and rich “good life” that was originally designed for everyone.
You, and I, and everyone else are works in progress on this adventure.
Julia is still hard at it – scanning the horizon for “her people.” Pondering in her own way where she belongs. My prayer is that there are good souls out there who will make space for her and experience something wonderful as they do.
This is adapted from an original post entitled “Beyond Awareness” on Chris Cook’s personal website: https://jchriscook.com
