What’s With This Global Epidemic Of Bagrophobia? - OstomyConnection
For me, my bag is a life-saving, life-changing, amazing, miraculous thing.

Bagrophobia?

There’s been a lot of anger on the internet lately – particularly on Twitter – about people’s use of language. Mostly I don’t mind what language people use as long as they’re not being stupid about it. Ultimately though, I’m unlikely to be the person tweeting you and claiming to be the arbiter of such things.

As a writer and believer in free speech, I’m mostly happy to let people use whatever language suits them. But a few nights ago (might be longer, might be a week or two; I’ve been taking pethidine a fair bit lately) I saw a tweet that I really did object to. Someone had tweeted that this ‘bad’ person was “a colostomy bag filled with hate.” Actually, I should put that on a line of its own; it’s that infuriating to me.

"A colostomy bag full of hate."

Where to start? What did this tweeter think she was doing? Did she think she was being funny? Clever? Original? Using her 140 character limit to its best effect? Well, f*ck you lady tweeting woman, because you’ve just found the bit of language I am offended by.

You’ve just reminded me why I started writing this blog in the first place, and why I shouldn’t stop, and why I should try to get people to read it from the beginning. You made me see that I’ve failed in my mission to normalize what’s happened to me and thousands of other people like me. Obviously, I realized my one little blog wouldn’t change the world, but I had hoped I was part of something bigger; a little ripple in the sea of changing misconceptions about ostomies.

You seem to honestly think that this is a disablist bit of language nobody will mind you using. Well they will. I do. Would you say a wheelchair full of hate? A prosthetic leg full of hate? No, of course you wouldn’t. I don’t think you’re stupid. But you think this is ok? And I think I know why; I think it’s because a colostomy bag is full of poo. And poo is funny. Well yes, poo is funny. Talking piss about people who discharge in a different way from you is not your place. I can do it. Anyone with a bag can do it. My friends can do it to me, but you can’t. You can’t arbitrarily use it as a term of derision. As a way to sneer. As the most hideous way you can think of to describe a person.

Obviously, I could have taken this woman to task at the time, but I don’t know her, she doesn’t know me, and it would come at her out of nowhere. Maybe writing a post about it, and not giving her the right of reply is wrong. To be honest, I don’t care; her tweet is just fueling the fire of what really concerns me.

I’ve not blogged on a weekly basis as I used to because I felt my story was told. Every tiny scary, terrifying, gory, uplifting detail of deciding to have a bag, to having the surgery, to having a second surgery to make it all permanent, has been laid out before you, should you choose to read it. I’ve done my little bit to effect some kind of change, and I do know it’s just a tiny bit. But now I find myself wondering what the point was, because the prejudice clearly remains. The concept of a bag as something hilarious and disgusting lives on. My tiny bit is nowhere near enough.

A young woman I talk to on Facebook – a beautiful, funny, intelligent young woman – was being chatted up in a pub not so long ago, and as it was going so well decided she would disclose her status as a bag wearer. And the young man who was chatting her up, who clearly found her attractive and engaging, responded in the way we would all hope nobody would ever respond. He told her he thought that it was repulsive, that she was repulsive and walked away, rejoining his mates at the bar and doubtlessly telling them how very repulsive this gorgeous, brave, lovely young woman was. She, of course, was devastated. He, of course, was scum. But maybe because of ignorance. Maybe because he doesn’t know enough. Maybe because nobody he knows or cares about has a bag. Or maybe he’s just scum.

I don’t think the tweeter who used the line that caused me to write this post is scum. I think she’s just ignorant. I think she hasn’t read all the information that is out there, and why should she have to? I don’t expect her to know. I do expect her to think though; to be aware that there are people out there – out here – with bags who would really rather they weren’t used as an unfunny line that the user thinks is terribly clever. It isn’t clever. It’s horribly unoriginal and really rather dated. I remember people making colostomy bag references when I was at school, and that was in the 1970’s.

Most of us who have them have had our body replumbed as a way to avoid an early death. And think about that; what an extraordinary thing medicine has created, that a body’s plumbing can be diverted – rerouted, so that it comes out from a whole other place – so that people don’t die. Not only do we not die; we go on to live lives that we’d forgotten existed. If you see us in the street, you won’t be able to tell we have bags of any kind. All you’ll see is someone apparently living a normal life. What we’ll know is that we can only appear to be doing that – actually be doing that in many cases – because of our bags. How can that be disgusting? It’s as disgusting as a new heart, or a new kidney, or… well, you get the point.

Of course, in the end, I know it’s a bag of poo. To me, it’s ‘just’ a bag of poo. No big deal. To too many people, still, it’s a filthy/comical/unthinkable bag of – euch – poo. How I’d love to see that change.

Regular readers will know that I have an ileostomy, and not a colostomy, but even good friends frequently get that wrong; many people don’t know the difference, and that’s fine – I want to normalize bags of poo in all their forms – you don’t need to know the detailed differences between the two. I do, obviously, or I’d end up ordering the wrong supplies and the results would be very messy indeed, but otherwise I couldn’t give a toss. I don’t mind if you don’t know the details of what it does, or how it works and I really don’t care what you call it, as long as you don’t use it as some form of insult. If you’re going to use it in a joke, and you don’t want to offend anyone, there’s only one rule, and it’s the same rule that I’d apply to any joke – for f*ck’s sake, make it funny.

This post originally appeared May 20, 2013 on mybagladylife.blogspot.com.

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