and other thoughts on living in a body that has never quite fit the mold
the photo I almost didn’t post
If you follow me on social media, you might already know that June was Scoliosis Awareness Month.
To close it out, I wanted to post a photo of my back. And it wouldn’t have been the first time I did that.
But I realized something: even though I have posted my back before, I was still only ever posting my “good” angles. The ones where my very obvious rib hump wasn’t as obvious.
And I was kind of disappointed in myself. Because on social media, I’ve always tried to be real and honest about my disabled body. But turns out, I was still trying to curate it. Still trying to make it more acceptable.
It’s not our job to make non-disabled people comfortable
So, I made the reel. And then I got a comment from some guy — actually, multiple comments.
Clearly, what I had to say really upset him.
He told me that I was overreacting. That people can’t help where their eyes go. That I should have used humour to put her at ease — that it was my job to help her feel more comfortable with my disability.
Read that again.
He was literally telling me that when someone stares at me for the way I walk, I should be the one to help them feel better about it.
this wasn’t the bridal experience I dreamed of
I’ve spent most of my life noticing how people react to my disability. It’s a sixth sense that most of us with apparent disabilities have developed over time.
The awkwardness. The stares. The polite-but-weird energy that forms when we enter the room.
And when I got engaged, I felt it again.
what to do when the future feels uncertain
Living with a progressive disease means living with uncertainty.
I don’t know exactly when things will get harder or how much my body will change. I just know that it will.
This is the part of having a progressive disease that people don’t talk about enough.
Not just the physical changes, but knowing your future isn’t in your control.
body positive phrases I’m tired of hearing
“Real women have curves.”
“Strong is beautiful.”
“I’d rather be this size than unhealthy.”
“Focus more on what your body does than how it looks.
What do all of these phrases have in common?
They try to uplift one group by stepping on another.
And they are deeply rooted in ableism and body shaming.