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DisAbility is 1 in 4: Choosing Love vs. Fear

by | Aug 18, 2018 | Autism/Disability, Grief & Loss, Midlife and Beyond, Motherhood, Nature, Spirituality, Uncategorized

“Ok riddle me this,” a smart friend posted on Facebook. “How is it possible that disability is completely foreign to the public at large when 1 in 4 adults in the U.S. have a disability that impacts major life activities?”

Her question time tripped me back to four personal incidents during the last 21 years of our disAbility journey. I responded:

Denial. Refusal to see. Fear.

I vividly remember talking to my “wasband” when my daughter was little and the autism diagnosis to still new. We’d been in a public playground, a play pit structure at the local mall where parents sat amphitheater-style while their children played below. I can’t remember what triggered the discussion. But I’ll never forget what he said: “People are scared. They don’t want to see, to look, to interact. It could be their child.” I was aghast at his explanation. But, over time, I realized, sadly, he was right.

A few years later, I sat at the doctor’s office and saw two men with intellectual disAbilities in the waiting room. One wore a helmet, perhaps to protect his head from frequent seizures. They were goofy and goofy looking. The vibe in the waiting room was *Freak. Out!* Nooooooo! Don’t look over there!
 
My heart ached as I observed this dynamic. I moved to seating across from them and began engaging the men in conversation. They lit up, so happy that someone noticed [their humanity]. Later, their caregiver thanked me for talking to them. She indicated my gesture was rare. 
 

Flash forward another handful of years. Same waiting room. This time it was obvious that Grace was a young person with an intellectual and developmental disability. She could no longer pass as just a cute, goofy kid. She was different. She was odd. Scary to some. That day, the people who sat around us, all in close proximity, averted their eyes. Nooooo! They didn’t dare look our way. Like those two men years ago, we were ignored as if we didn’t exist.

That was a sad day.

There’s lots of sad days, and now, more so, moments on the disAbility journey. You collect these experiences when you live a differently abled life. But, in order to live in peace, I can’t let people’s ignorance color my days. I’ve learned to process these experiences quickly rather than let them yank me down into a dark place. 
 
Yet, every now and then, as I said for two-plus decades about disAbility grief, you’re going along fine and you round a corner and get gut punched. It happened to me this spring. My daughter is now a young adult. I had to call my sister to unpack it. A casual friend so clearly did not understand my daughter’s disAbility. I felt hurt* by the incident/conversation. It was clear this woman  wasn’t getting the cause-and-effect disAbility piece. I quietly severed the relationship. It was a wound to my mother’s soul. One of those Mama Bear moments when you’re like: “This is *my* child you’re talking about. Let’s not go there.” I didn’t roar or bare teeth, but it was the same emotion point. Hurt. (Hurt always lives beneath anger.) We are particularly tender when it comes to our special needs offspring. 
 
Individuals with autism sometimes do odd stuff. And there’s so many reasons: frustration for lack of communication ability, a driving obsessive compulsion, sensory overload, intellectual disAbilities. They’re not “bad.” They’re not mean. They need understanding.
 
We lack understanding….
———————————- 
*I wanna make a distinction here. As I wrote about in my last post, here, we choose our reactions. I’m not at that flat plane of zen, so-to-speak, in my life yet. I still react to things. I still allow myself to get triggered. These days I usually catch myself. Still sometimes it can take awhile for me to realize I’m choosing to star in my own freak-out show. I want to get to that place where shit stuff happens and I’m like “meh.”
 

The world wants us to REACT! But how’s that gonna help our blood pressure? Our heart? Our peace of mind? For me, part of the unravelling of the drama has been the difficult realization—especially in western culture—that we are victims only if we choose. (We live in a victim culture.) When we take up the rallying cry of victimization we’re getting something out of it. And just like those scared folks who didn’t want to look at my child on the playground or in that waiting room, or those two men at the doctor’s office—it’s hard to look at the emotional payoffs for wallowing around in drama. Poor me. Look at me. Woah is me. Drama-drama. Been there. Done that. Still do sometimes. I love a good drama until I realize it’s toxic.

That’s not to say that we don’t combat injustice. I’m not endorsing morphing into a welcome mat. We just have a choice in what we’ll do. Let it poison. Process it. Let it pass. Doing something constructive. Instructive. Hint: it ain’t easy. Especially at first.

That wonderful word “resilience” popped up in my life this week. Learning to deal with societal ignorance, learning to choose how we let it rock our world or not—that’s how we survive this journey. Any life journey. It’s part of resilient living. Resilience feels strong. And, it looks and feels beautiful.

BTW: I’m back working on my Wholistic Life Coaching certification. My focus is self-care for special needs parents, but I’m open to working with others. Feel free to reach out.

Photo: Morro Bay State Park. Traveling bud, aka “Thelma,” and I drove up the 3/4 of the California coast late last month. This was a sweet, serendipitous find. How can it get more perfect than this?: Fog and a “Journey with Grace” curving boardwalk out into an estuary. More snaps on my personal Instagram account @ leisahammett