How The Body Positivity Movement Left Us Disabled Women Behind

"Body positivity is all about having a good relationship with your body."

Well that’s what everyone keeps telling me. The only problem is, if I told anyone about the way my body treats me, they would tell me it’s a relationship I need to get the hell out of.

I have Ehlers-Danlos Syndrome which is essentially just a fancy name for a fun condition that affects my connective tissue, leaving me in constant pain. Like I said, fun stuff. The body positivity movement doesn’t seem to cater for people like me, with disabilities or chronic pain. Instead it tells you to embrace stretch marks, jiggly bits, and all those things society loves to tell you are "flaws".

Now, don't get me wrong, this is still super important. Women shouldn’t feel pressured to be like the airbrushed bodies in magazines, they should be encouraged to love their own bodies. But to everyone who tells me I should be body confident too: how am I meant to love something that causes me constant pain?

As my condition has got worse, so has my relationship with my body. It’s the reason I’m not able to have a full-time job, an active social life, or be completely independent. And as someone who loves to be busy, it makes sense that I’d start to resent my body. Stretch marks may be a reminder for you that you’ve gone through puberty or given birth, but my body is just a reminder of all the things I haven’t done, or more specifically, can’t do.

So that's why, whenever I see #bodypositive underneath an Instagram photo, I see another feminist movement disabled women have been left out of. Keah Brown, a 25-year-old journalist who suffers with cerebral palsy, has been working to change this by using the hashtag #disabledandcute, which recently went viral. Keah said she started the hashtag as "a way to celebrate my new found confidence and journey to finally liking myself."

She adds, "It was such a long road and when I got here I wanted to keep a piece of the arrival to that positive place with me always, and this hashtag was a great way to do that.” The typical portrayal of disabled people as pitiful in the media meant to her that “so much of my disdain for my body was based on the fact that the only time I ever saw myself represented was through the gaze of hating my disability. I never saw myself entirely, because almost every disabled-based story I saw was also a white disabled person’s story, so race came into play as well.”

A study last year found that able-bodied actors played 95% of disabled characters in top TV shows. And as Keah pointed out, these characters typically still don’t offer the representation of body positivity that we really need. It’s rare to see an actor where their disability is simply incidental, rather than a central feature of their character.

For me, it’s not just an issue of representation, but control. I don’t feel confident in my body because I don’t feel in control of it. That feeling then spills out until it’s not just that I resent my syndrome’s impact on my body, but I also don’t like my legs or my stomach either. My disability has influenced my entire view of my body. It doesn’t even seem to belong to me anymore, and I sure as hell don’t want it. Or, at least, I didn’t used to.

I recently realised that learning to be disabled and confident in my body meant first accepting that this is the body I’ve got. I’m surrounded by doctors, family and friends trying to "fix" me, telling me they hope I get better soon instead of realising that this is a life-long condition. But they’re all still hoping one day I’ll wake up with a body like the women in the magazines, not because it’s skinnier or more toned, but because it works. Mine doesn’t work. And it's unpredictable; one day I’ll be able to go on a long walk, and then on another day not even be able to get out of bed. And I’m still not completely okay with that, not yet anyway, but accepting that this is the body I’ve got means I’m not as angry anymore.

In one sense I’m lucky, as I have an "invisible" disability which, as the name suggests, means I don’t have any physical markers of the pain I’m living with. Though this means sometimes people think I’ve made the whole thing up (really), a positive is that I don’t get the judgemental looks, or the body-shaming, because when I walk down the street, no one knows.

When I recently moved to another town, I consciously made the decision not to try and hide my disability anymore. I told people when I had hospital appointments, rather than just saying I was mysteriously ‘busy’. It’s a small step in trying to take control of something that’s been controlling me even before I was diagnosed. Making it a part of my identity rather than something entirely separate. Maybe learning to love a body with a disability is just like learning to love a body with any other so-called ‘flaw’, you’ve just got to own it.

And that’s exactly what #disabledandcute has shown me. Disabled women and chronic pain sufferers may not be seen frequently in mainstream media, but they’re there, doing their bit to help women like me find some sort of relationship with their body again. The hashtag filled Twitter with disabled women, equally as sassy as they are sexy, telling the world that they’re still beautiful.

Since I’ve started actively seeking out women liked Keah on social media, my timeline is now filled with a whole new community who feel exactly how I do. From beauty bloggers like Ruby Jones to hilarious vloggers like the Mandeville sisters, I’m surrounding myself with incredible disabled women. This takes something that could be really isolating and makes me feel a little less lost. Body positivity should mean more than loving your weight, your hair, your skin. It’s about knowing that your disability doesn’t define you, while still embracing it both as a part of your identity and your body image. It’s about being #disabledandcute. Disabled women need to be brought into the body positivity party. Don’t worry, I’ve brought cake.