His Own Day

This year marks the 10th anniversary of World Down Syndrome Day. In 2005 on the first WDSD, I was a student at Northeastern University earning my Master's Degree in Composition and Rhetoric. I had never known anyone with Down syndrome personally. I had only ever taught one student with a significant disability. Little did I know the ways in which my degree would help me to understand and articulate the (sometimes damaging) rhetoric of disability. Ten years before that I was a junior in high school. In 1995, mainstreaming students with disabilities was the popular educational model. That meant that students with disabilities attended my public high school, but they spent most of their day learning in a separate resource room. We didn't even eat lunch with them. My greatest exposure to disability was through the high school cheerleading coach, who had a little boy with Down syndrome who often came with her to practices. He was a busy little boy. I remember feeling overwhelmed just watching him zip between the cheerleaders doing their warm ups in the hall outside our auditorium. He's a handful! I would think as I breezed by.

In 2015, my son learns with typically developing classmates in a fully inclusive setting. He romps on the playground with them, climbing the equipment, playing superheroes with the boys in his class. Some days he's line leader, other days he's the teacher's helper during circle time passing out props to his pals for singing the songs of the day. He loves the Hokey Pokey and the dramatic play area. He loves riding a trike down the halls after a good session with his OT. He stops in the office to give the school admin assistant Mrs. G a hug in the mornings. "Hi G!" he bellows as he steps into the office with all the authority of a general. I am sure it has never crossed K's mind whether he belongs or not. No one has ever given him the impression that he doesn't.

That is what a generation of parents accomplished when they declared that being seen and never heard was not enough for their children. That is what a decade of World Down Syndrome Days and Buddy Walks and Educational Reform and Federal and State Legislation have afforded my son.

Is 3-21 important? You bet!
Do we celebrate it? Every day.

Every day that K gets to go to school and learn with kids his own age, gets access to appropriate medical care, sees a therapist to help him with his emerging skills, gets on a horse to strengthen his core muscles and support his cognitive, social, and emotional development, and enters a public place without threat of being discreetly asked to leave is cause for remembering how important advocacy is, is cause for carrying the torch of equal access into the future.

Maybe it seems odd that on any given day, in any given moment, tears of gratitude might spring to my eyes when I see that K is allowed and able and welcome. I used to take those three words of access for granted when we were only four. Becoming five changed that forever.

Mark and I recently discussed whether the narrative of disability that we grew up with shaded our reactions to K's diagnosis that first day of his life. What informed our feelings of devastation and loss? What told us to be sad? I do believe there is something very natural about being sad when you receive the news that your child will live with a disability and that you will not be able to "fix" it for him. But I also believe that the part of us that felt (for a short time) that this chapter of our lives was a tragic ending instead of a promising beginning was most definitely shaped by the narrative that says disability makes individuals incomplete, incapable, and unlovely. It was informed by the same mythology that prompted a doctor to once ask Mark, "Why did you have him?" It was informed by the same misinformation that has prompted well meaning people to be surprised when K (at various times) could understand us, feed himself, and talk.

What will ten more years of advocacy bring? I hope it helps parents in doctors' offices receiving prenatal diagnoses to feel hopeful for their family's futures, to choose a promising beginning over a tragic ending. I hope it helps parents in hospital rooms who weren't expecting the news to wipe away their tears a bit sooner and see endless potential in their new little ones. I hope it will improve research and medical care and access to education. I hope it will create more legislation that allows adults with disabilities to have greater independence and more financial freedom and more legislation that protects expectant parents' rights to accurate and timely information when faced with a prenatal diagnosis. I hope it will create more specialized medical programs like Children's Hospital's Down Syndrome Program and UMass Medical's similar program set to open its doors to patients in the very near future. I hope it will give adults with intellectual disabilities a greater platform to speak and to be listened to so that, in their own words, with their own voices, they can join the chorus of voices that declares "I am valuable and whole and vital." Advocacy changes the rhetoric. The words we use shape how we see, and how we see shapes the words we use.

It's unlikely that I'll pause tomorrow in the chaos of daily life to ponder another World Down Syndrome Day, but its decade of advocacy will very likely impact our day. And we will continue to champion its cause, seeking ways to open more and more doors in our society, not just for the sake of our own sweet son, but also for the sake of families who will someday get the same news and follow the same path we have. In the words of a good friend, dedicated dad, and fellow traveler, "We'll pay it forward any way we can." I'll lift my glass, my pen, and my time to that.