Late last year, I was included in a round-up of . It was a collection of movers and shakers who are doing great things to challenge and change the way we view our bodies, and I was honored to be included. But I was also surprised. As a disabled woman, I’m not used to seeing my body celebrated — or even shown.
What I am used to, though? Seeing society view disabled bodies as broken and inadequate, as something that needs to be fixed and as something to be ashamed of.
Look like a blobfish.
Look like a parade balloon.
Look like a potato with a face.
Even though I came of age in the ‘90s, long before social media, I’ve spent years hating my own body because society said I should. I was born with Freeman-Sheldon syndrome, a genetic bone and muscular disorder. I had some 25 surgeries by the time I turned 15.
And, yes, there’s no denying that my body is “different” than society’s definition of normal, with lots of surgical scars, deformed hands and feet, a small mouth, just to name a few. Growing up, I equated "different" with "bad" and "unworthy." I remember reading magazines in my room and seeing all the pretty models wearing the coolest clothes; none of them were disabled and it didn’t help that I also never saw myself in movies, TV or even music. Disability representation was virtually nonexistent back then, which further sent the message that disabilities are shameful and should be kept out of sight.
Yet as an adult, my career has kept me everywhere but out of sight. I graduated college with a degree in journalism and worked as an adviser to the student newspaper at the local community college before becoming a freelance writer. Part of my job is being very active on social media, where places like Twitter have become a breeding ground for some of the most toxic bullying I’ve ever seen; you may have seen my in which I clapped back at trolls who said I’m too ugly to post photos of myself, but, sadly, that’s not the first time I’ve been body-shamed online because of my disability. The reality is that it happens all too frequently, and although I easily brush off those cruel words now, ignoring them wasn’t always so easy to do. In those early days of social media, I found myself agonizing over every insult. It was almost as if their hurtful words got in my head and took up permanent residence; there were even times I’d start to wonder if they were right. Well, maybe I really am ugly, I’d think. Maybe my disability is disgusting.
This, of course, is the ultimate in gaslighting and I often wonder if being disabled and a woman made me particularly vulnerable to these taunts.
Our culture loves to tell women “Oh, yeah, of course you can love your body!” but also, “Oh, not that body!”
Our culture shouts “girl power” as if it’s the latest catchphrase, but only if you’re the “right type” of girl.
All those mixed messages are amplified times a million for disabled women.
It wasn’t until my early 30s that I truly began to see my body in a whole new light. The idea that "disabled" and "body positivity" could be in the same sentence was something completely foreign to me, but they do belong together. This new concept gave me a freedom I’d never felt before — the freedom to, for the first time, be 100 percent me, no shame. It also felt revolutionary, even a rebellion of sorts; here I was rejecting society’s views of what disabilities look like: Loving everything about myself that I’m supposed to hate. Showing every part of myself that I’m supposed to keep hidden.
I also actively began to look at my body in the mirror. Where I once loathed the sight of my reflection, I now began staring back, and that very act certainly gave me a new perspective. I noticed my freckles, the glimmer in my eyes when I smiled, my red hair that reminded me of my father. I noticed all those things, seemingly for the first time.
Of course, I also couldn’t help noticing the disabled parts of me, like those scars and my deformities. But now, they no longer seemed to be magnified to ugly proportions by the mirror. In fact, I began thinking about everything my body has been through and I began to realize that my body isn’t broken or unworthy — it’s actually pretty badass if you ask me!
I wish someone had talked about this with me when I was a teenager or during those early days of social media. I often wonder how my journey would have been different if I’d been taught more about self-esteem as it relates to disabilities. Maybe then I wouldn’t have wasted so much mental energy on people’s opinions of me that didn’t matter. And maybe I also would have realized that believing I was ugly and unworthy and that my disability made me a burden had led to a massive case of , which occurs when disabled people absorb ableist messages from society and project those prejudices and stereotypes onto themselves or others.
A huge part of ending body shaming involves teaching disabled young people to love themselves so they don’t internalize those horrible messages society throws their way. When it comes to disabilities, we usually talk about practical things like accessibility, but we don’t talk about disabled body shaming and its harmful effects. Honestly, a lot of the time, we don’t acknowledge that it even exists and people are often shocked at just how widespread it is.
That’s part of the reason why the particularly cruel and hateful comments I get from trolls on social media. I do it not so much to call out the person, since I black out their name, but as a way to highlight the words as an example of the cruelty disabled people regularly encounter. We can’t change what we don’t acknowledge and pretending like these words don’t exist helps no one; it only further normalizes the hateful rhetoric and bullying for the next generation.
My hope for the next generation is that we teach disabled teens how to love themselves unapologetically, and that starts with normalizing disabled bodies. We need to be respecting, celebrating, accepting and loving them, not shaming and shunning them.
I turn 40 in August and even now, I still routinely take an inventory of my thoughts. If I don’t catch myself, I start believing society’s views of disability again. It may have taken years to change how I viewed myself and get to a point where I’m finally starting to love living in my disabled body, but I’m here. Yes, it’s tough to be a disabled woman in 2021. But my disabled body is tougher, and I’m loving this view.
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