Did you know individuals with disabilities are the world’s single largest minority population? Roughly one in ten people live with a disability. And while we often think there’s “strength in numbers” those with disabilities often voice feeling isolated, underserved and alone. October is Disability Awareness Month and National Disability Employment Awareness Month. These initiatives strive to celebrate the many and varied contributions of American workers with disabilities and create greater awareness and understanding or living with a disability.
For me, disability awareness is about celebrating the unique contributions every individual makes to our world. Yes, in our workplaces, but also in every facet of our communities – schools, playgrounds, houses of worship and places for play. Disability shows up in so many ways – but I just want to speak from my personal view.
On each of our children’s birth announcements we included the passage “Children are a gift from God. ~ Psalm 123.” All of my children are blessings, and each has taught me so much. To shed light on my experience of the impact someone with a disability may have, I’ll focus on the gifts Sean gave me.
Sean’s bumpy entry into this world and subsequent challenges led to him living a life of complex medical challenges, chronic pain and physical limitations. Depending on people’s vernacular, they might refer to Sean as “crippled”, “wheelchair bound” and “handicapped”. I like to think of him as a young man who used a wheelchair for mobility and expressed himself with eye gaze and a communication device. More than his medical diagnoses, he was just Sean.
I never fancied myself an “advocate”, but as the years went on, I found there was work to be done. Sean was the youngest of my three children, which meant that in addition to his diagnoses of cerebral palsy and seizure disorder, he had “Third Child Syndrome”. You may be familiar – it means you get schlepped to the older sibling’s soccer games, School Bingo Night and more. When Sean was a baby, his differences didn’t appear as evident. From a quick glance, you would see a baby in a stroller who looked a bit tired. You wouldn’t know he had severe muscle tone issues that made it impossible for him to sit unsupported.
As Sean grew, the challenges became more visible. Now he presented in a wheelchair and was non-verbal. Questions came up. Often from kids. I was grateful they asked, curiosity is a gift and opens the door to conversation and connection. And there were days I was so exhausted (every parent can relate to that!), my mind got snarky but I tried to be kind with my words. I was the grown up here, kids are just curious.
“What’s wrong with him?”
What I think – “Nothing. He’s perfect.” or “Go away.” or “I just saw you picking your nose two minutes ago – what’s wrong with you?” (Oh, I know, they’re children…I’m just being honest here. I don’t think I ever actually uttered these words. To the child in question. Maybe when I came home and told my husband he had to take Sean to the next event because I was clearly at my breaking point.)
What I say – “Nothing. This is Sean, what’s your name?”
“Why can’t he walk?”
What I think – “Do you know how much I’d LOVE for him to walk? I want him to feel the sand shift as his feet touch the shoreline, hear the crunch of leaves as he hikes the trails at Valley Green and feel the power of his legs as he runs on Kelly Drive.” or “I really wish he could. Pushing Sean plus his 150 pound up this hill is a bear.”
What I say – “His legs don’t work that way. This is Sean, what’s your name?”
“Can he talk?”
What I think – “No, did you know it’s actually an incredibly involved process for the brain to send the message to the muscles in the tongue and mouth to coordinate specific movements to align with breath to facilitate this?” or, more often, “Do you know how much I’d LOVE for him to say “Mommy, I love you? This makes me weep more than I can tell you.”
What I say – “Sean uses his eyes to tell me how he’s feeling. What’s your name?”
For every question, the answer was truly as simple as this. “This is Sean. This is how God made him.” It was my job and privilege as his Mother, to celebrate all the unique qualities that made him who he was.
Sean challenged me in ways I never thought possible. I was never medically inclined and perfectly happy in my work in Marketing. Sean put me on a different path. I didn’t realize it for many years; in fact, I fought against it.
Sean always had a way of bringing out the best in people and was patient and persistent. He asked me to rise above my self-limiting beliefs and doubts and step into discomfort. I couldn’t just witness that there weren’t yoga programs for individuals with disabilities. He said, “Get off your butt, Mom! Go figure it out!” (We’ve already established that Sean was non-verbal, so there’s a chance he may have phrased it differently.)
Now I lead an Adaptive Yoga Program, where we serve individuals with disabilities and their caregivers. It’s all centered on a common belief – celebrating each of our unique bodies and souls. For me, this is the heart of the practice of yoga, and, even more so, the practice of life. Seeing the gifts that each individual brings to our world, isn’t this what we’re called, as humans, to do?
I envision a day where there isn’t a need for Disability Awareness Month. That our culture recognizes and celebrates each individual just for being here. Good thing Sean taught me patience and persistence. There’s work to be done, but I’m in it for the long haul. Who’s with me?
Kerri Hanlon is a mother, writer and co-founder of Yoga Home in Conshohocken. She shares her experiences so others know they are not alone. She’ll join her Yoga Home community in celebrating Disability Awareness this month by celebrating the Adaptive Yoga Program to shed light that yoga is for EVERY body. She can be reached at firstname.lastname@example.org