October is for awareness. The other eleven months are for the real work.

Confession: I have mixed feelings about awareness months. Not because they are inherently bad, but because they tend to overlook something essential. When October turns to November, those of us in the Down syndrome community will turn down the volume on shouting the worth of our loved ones with Down syndrome through social media, awareness events, and fundraising campaigns and continue the daily work of advocacy. This work isn’t always shiny or feel good or celebratory. It’s hard, slow work. Sometimes it’s painful.

Raising awareness is important, but awareness alone doesn’t address a root problem that people with disabilities face in their day-to-day lives. What is that problem? Society isn’t designed for people who experience life in non-typical ways.

When we think of awareness, we think about how we can include people on the margins in our world. But what if real awareness in action is a paradigm shift? What if it’s doing more than giving an extra smile and a nod, more than giving an extra buck? What if, in addition to shouting worth, we quieted the noise and asked, "What would a world built for ALL of us look like?"

There’s a name for this paradigm shift. It’s called a social model of disability. The social model suggests that disability is primarily caused by the way society is organized, not just by a person’s impairment or difference. Think of it! If you use a wheelchair for mobility every day, curbs make it hard for you to access life in a city. Heavy glass doors might mean you can’t enter some buildings. And narrow aisles on a train make using public transportation next to impossible. But. What if those barriers weren’t there? Would you still be dis-abled? Of course not! You’d have access just like everyone else. Your mobility difference would not impede navigating your environment.

Or, what if more picture books contained characters who looked like our K? Or more parents taught their kids about disability? Or better yet, they helped their children foster meaningful friendships with classmates who have disabilities? What if schools included disability history in their social studies curricula? Would a middle schooler bumping into K on a playground come to a full stop and stare? Would a little boy rounding the corner of a toy aisle startle and back away? Would two girls on a bouncy pillow with K move in too close, stare too long (while he’s just trying to move), and then huddle together to discuss their observations? Probably not. But all three of those things happened in the last two weeks. We don’t mind curiosity when we’re out and about, but these kids’ reactions looked like more than curiosity. They looked like discomfort. Fear. (Dare I say it?) Ignorance.

One month a year will not fix this problem. But the two things that will are almost as simple—listening and taking action.

What if the presence of disability in our society was so normalized and welcome that those kids K encountered had said hi to him and asked him their questions? He doesn’t mind talking about having Down syndrome. What if we asked people who experience the world differently what they need from us?

We might hear answers like, It would be helpful if … you said “Hi!”

you spoke slower or used more pictures,

you moved that bookcase or widened that aisle,

you turned down the volume,

you changed the lighting,

you waited for me,

you asked me if I wanted help instead of assuming I need it,

you invited me over,

you took an interest in what I like,

you asked me to lead,

you took a chance and hired me, then made it possible for me to stay.

Awareness in action is little gestures every day that change the built world in building block fashion—restructuring it to give more people agency, independence, and dignity.

What I know after eleven years of being K’s mom, after twenty-two years of teaching kids who learn in a myriad of ways, is this. Across the board, we all need to slow down. We all need to pay attention. We all need to invest in relationships in equal measure to our passion for productivity and achievement.

During October, we gather, celebrate, and declare with pride “Down syndrome is a life worth living” (Karen Gaffney). The other eleven months, let’s be counter-cultural. Let’s insist, as we listen and respond, that a thriving society is not measured in dollars or achievement or fitting in, but in belonging.