The incident in a Bishop's Stortford bar that made me angry on behalf of everyone with an invisible disability
Beth Purvis, aka Bowel Warrior, a 40-year-old mother of two in Elsenham, writes for the Indie every fortnight about living with stage 4 cancer...
If you walked past me in the street or even stopped and had coffee with me, you would never know, just looking at me, that I had cancer; it’s not stamped on my forehead.
The other thing you would never know if I didn’t tell you is that I have a colostomy bag.
Both these things are considered disabilities in their own right, so I am apparently disabled on two counts – lucky me! Although the colostomy bag is a direct result of the cancer, so I tend to look at it as one, a whole: just the cancer.
How does cancer, my disability, affect me? Every day there is a reminder of it, every time I have to change, or even look at, the colostomy bag, although there are benefits – I never have to worry about dashing to the loo after a curry!
Each time I climb steep stairs, or can't quite keep up with the kids and end up breathless because, well, I have 10 chunks of lung missing... yep, that breathlessness is another reminder and direct consequence of the cancer. I can never get away from it and it is always in the back of my mind, worrying about when it will come back.
Recently I experienced an interesting side effect of cancer while out with the girls for a few drinks. Just as I arrived at the Water Lane Bar, the colostomy bag filled up; never mind, I carry spares.
I walked in and headed straight for the toilet – the disabled toilet. As I reached for the door handle, I heard a voice shout: “Please use the ladies, it's only there!”
The security guard standing in the hallway had taken one look at me and decided I was not disabled.
Ahem, I have every right to use the disabled loo and I shouldn't have to explain myself. I shot back at him: “I am disabled. I need a sink in with me and the extra space because otherwise I end up covered in s**t. I have a colostomy bag. Do you want me to show you?” Then I remembered I was wearing a jumpsuit – I would also have to flash my tits. He refused my offer to view the bag. Phew!
After using the loo I stormed over to the girls and vented – they weren’t expecting that greeting. My friends were, of course, suitably sympathetic and indignant about the whole thing on my behalf.
Why was I so annoyed? Did I feel accused of doing something wrong? Yes I did. Was that why I was so cross? Yes, I'm sure that had something to do with it. Did I feel judged? Absolutely yes, and unfairly too – that was definitely a big part of it.
I think the biggest thing for me though was thinking of all those who would be too embarrassed to own up to having a colostomy bag – believe it or not, many want to keep their bag a secret. We don’t all go round telling everyone about our bowels, it's just not the done thing. Frankly, most of us feel weird about this stuff with our own families, let alone with complete strangers.
My anger was mainly on behalf of everyone with a colostomy bag or an invisible disability who would just like to get on with their lives and not have to tell the world why they are disabled.
I guess the bar staff might argue they want the disabled loo to be available for those of us who need it when we need it, and yes there will be people who use it that don’t need it. OK, makes sense. However, in my experience, people don’t use the disabled loo unless they actually need it, and you know what, if the odd lady avoids the embarrassment of wetting herself when there is a huge queue for the loo, I think I can forgive them – as a mum with a weakened pelvic floor, I’ve been there!
If they really feel the need to challenge people, how could they deal with this in a more appropriate way?
It’s simple really, they could have been more careful about their language and they could have been more discreet. Walking up to me and saying softly: “Excuse me, if you're able to use the ladies/if you're looking for the ladies, they're just down there.” There is no assumption there, this allows me simply to say: “Thank you, but I need to use this one.”
Not all disabilities are visible.