The perils of chasing “normal”

A valuable lesson learned from my disability

“You know, she’s taller than I thought she’d be.”

I’m about 10 years old, lying on the floor of my classroom with my fellow students all standing around and staring down at me. Moments before, I’d been perched on the footrests of my power wheelchair, leaning against a counter as I pinned up something on the wall. I’d taken a tumble and was now lying on the floor with a broken leg. I’d gotten through the mindless screaming portion of the event, and I was now lying still, trying to control the pain with the same Lamaze breathing techniques that women in labour use as I awaited transport to the hospital.

Because of my brittle bone condition, this was not the first time I’d broken my leg, and it certainly wouldn’t be the last. It was, however, the first time it had happened in front of my classmates.

When I return to school, likely weeks later, my classmates pulled me aside and informed me in hushed tones that when I’d fallen and was screaming, I’d called out for my “Mommy.”

I have no memory of this. The pain of a femur fracture is so off-the-charts explosive that I could’ve called out for “Mickey Mouse” for all I knew, and I told them this.

Still, my classmates were quite scandalized on my behalf. They told me I just shouldn’t do that.

I remember looking at them blankly. They had to be kidding me. Did they not understand what pain like that was like? How it completely short-circuits any sort of thought process entirely…

When I had a broken arm set and cast at the age of six, in between all the screaming, I kept shouting “Ken! Ken!” because I had been really fixated on getting a Ken doll for my Barbie at the time.

(And yes, my parents got me a Ken doll the very next day.)

But my young classmates didn’t get it. They couldn’t. They had no frame of reference for that kind of pain, so they latched onto the fact that I’d called out for Mommy and, in the world of 10-year-olds, that wasn’t done.

I didn’t know at the time, but the event was a powerful lesson for me. Despite their efforts to point out something shameful, I solidly rejected the notion. I had done what I needed to do to get through the experience.

When shame isn’t helpful

Humans are social animals, so we are hardwired with a powerful desire to go along with the norms of the group. We are also hardwired to point out when others stray from those norms to pull that person back into the fold.

In some cases, reinforcing these norms is very helpful, such as encouraging folks to be civil to one another and get along in polite society. Many of us have had that experience as children when a grownup has prompted us to say “please” or “thank you” with the implicit sense that not doing so would be wrong, even shameful.

The challenge is when what is considered “normal” doesn’t apply or can’t be applied, as with the case of my 10-year-old self and my broken leg. I wish I could say that I fully embraced that lesson and never felt shame about anything related to the unique needs of my disability after that, but it’s been a tough lesson to learn, given that we are all swimming in a culture determined to police everything about ourselves and each other.

How it’s shown up for me over the years:

• Measuring my self-worth by my ability to do things completely independently

• Choosing high-stress employment that had demands not conducive to my physical or mental health

• Stubbornly “getting by” instead of asking for the support that I actually needed as a person with a disability

But, slowly, I am learning.

Last week, for example, I went to get an echocardiogram as part of a barrage of requested tests for my new specialist. I’ve had this test done before, and in the past, I would have climbed out of the wheelchair up onto the examination bed. Not a hugely risky maneuver for my younger self, but certainly there was some risk involved that I might fall off the bed with dire consequences. Mostly, I would have done it because I wanted to do things the normal way and not be a hassle for the technicians.

I’m a great deal more cautious now after my lengthy hospital stay, so this time I asked them if I could stay in the wheelchair for the test.

Not a problem. Does my wheelchair seat recline at all?

Yes, it does—a fairly new, post-hospital feature on my chair.

Even better, they said.

I did the test with no fuss and, more importantly, I didn’t feel shame over making that request. I asked for what I needed to be safe, and, if anything, I felt proud of myself in coming up with a better solution to ensure I didn’t take an unnecessary risk.

Embracing being not-normal without shame

Here’s something that they don’t tell you about throwing out the normality rule book… You have the opportunity to write your own.

I spent so many years trying to shoehorn myself into society’s expectations of me around having a regular 9-to-5 job and trying to manage all aspects of my life independently. In all that time, I never sat down and reflected on whether this “normal” life was ultimately healthy for me as a person with a significant disability. I think I was so focused on how others might judge me or shame me that it prevented me from properly taking stock of what I genuinely needed to function, given my unique situation.

Now, you might be thinking, I’m normal and not disabled, so none of this applies to me.

Maybe… or maybe not.

• Maybe you’re a single parent who is juggling your career and your kids

• Maybe you’re a caregiver to special needs kids or aging parents

• Maybe your job has taken you far away, and you are trying to maintain a loving relationship with your partner across a great distance

• Maybe you just got a health diagnosis that turned your world upside down

• Maybe you’re travelling life’s path alone right now, and that in itself is a heavy load to bear

I bet if you think about it, there’s some aspect of your life that you could point to that you wish were more textbook normal. Whatever that situation might be, are you looking at it in light of what you genuinely need to get through it or how others might judge you for it?

I’ll let you in on a secret: the people who seek to judge you or shame you aren’t thinking about you at all; they are thinking about themselves.

Even my 10-year-old classmates weren’t worried about me crying out for my Mommy. They were frightened because they had never seen someone in so much pain before. They would rather judge me for how I expressed my distress and minimize that pain than absorb the fact that I was in so much pain that it could change me into a person that they didn’t recognize.

So, what I’m learning is to ask now, “Do these norms have a benefit to me?”

Are they like the “please and thank you” kind of norms that promote kindness, connection, and compassion between myself and others?

Or are they the type of norms that promote unnecessary shame? Do they instead seed the ground for isolation, health risks and burnout?

It’s a lesson for all of us to think about.

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Athena Cooper splits her time between being a fine art painter and a creativity coach with Tilted Windmills. If you’d like to support developing your creative practice, consider booking a free 30-minute consultation.

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