A Shelf and A Hook

Join my petition and help me to get stoma signs on disabled toilets doors and appropriate stoma facilities within.

Venturing out-with the confines of my own bathroom never intimidated me before Ophelia came along; and I didn’t think I would ever need unhindered access to disabled toilet facilities, I was wrong.  A bowel and rectal cancer diagnosis at the age of thirty-one would change all of that.  The massive tumour growing internally and externally was left to run its fiendish course for a year; I first presented with bleeding and uncontrollable pain at thirty, but was dismissed by multiple medical professionals as ‘just having piles’ throughout my thirtieth year.  Then everything changed; I ended up in A&E twice in a two-week period, the first time my mother took me, the second time an ambulance had to take me as I was in too much pain to stand.  I had known within myself for months that it wasn’t piles; I went back to my GP and other medical professional’s multiple times in an attempt to get taken seriously – to get some help, that help did not come.  

“What if it’s cancer?” I asked.

“Oh no darling; it isn’t cancer, you’re too young for cancer.” Came the doctors reply.

Well, darling had cancer; darling had late stage three early stage four bowel and rectal cancer with suspected left groin node inclusion, and darling was a few short weeks away from a terminal diagnosis.  I was going to spend the following months fighting for my life; going through a gruelling surgery to remove the cancer and be left with a stoma.  My scars would take at least a year to heal fully – if they ever fully healed that is. There was a high chance of stress incontinence that would most likely need more surgery to correct, if I could face it.  I couldn’t face it and it wouldn’t have made much difference anyway; it turns out after a few investigations the issue lies with my spinal cord and the damage caused to it by the radiotherapy, the messages between my bladder and brain simply have a delayed and mislaid relationship at best.

At this stage I had never heard of a stoma, and didn’t fully understand the impact it would have on my daily life.  I got through the chemotherapy, radiotherapy, surgery, multiple post-operative life threatening infections – all the rigmarole that goes along with cancer life, and was finally able to go back out into the world.  Everything was moving fairly smoothly and then I hit a repeated gnarly snag, and that snag was the actions of those around me when I tried to access the disabled toilet facilities I am legally entitled to use.

Since 2014 I have used a disabled toilet only once without receiving physical and verbal harassment from members of both the able-bodied and visibly-disabled communities; I would stress not all members of these communities have behaved in this way towards me, but for ninety-nine percent of my public disabled toilet stops I have been on the receiving end of some truly heinous treatment. A few months after my surgery (at a stage where it wouldn’t take much to reopen my wounds) I was out at a local shopping centre trying to use the disabled toilets at a well-known store; as I was on the cusp of entering the toilet the caretaker grabbed me by the upper arm and yanked me backwards while saying “not you, you can’t use this”, in response to this I flashed my full and pancaking stoma bag while asking “does this look normal to you?”  My red, angry, almost six-inch abdominal scar was also on full show; and after he was presented with this sight he dropped my arm (which he was still holding aloft) and turned away with a look of bewildered disgust on his face.  A few weeks after that I had someone in a mobility-scooter deliberately ram into my back/bottom; where my second (almost thirteen-inch-long) surgical scar is situated, all the while shouting offensive vulgarities at me.  As with the first physical toilet interaction; the weak spot at the top of my rear scar opened up and I had to get checked over by my surgical team, luckily I avoided wound packing both times.  Not every disabled toilet stop I have made has been this aggressive but many haven’t been far off it, I’m almost always sworn at, yelled at, shoved, tripped and pulled out the way, questioned, insulted and made prove my need/unseen disability.  The sheer amount of bilious vitriol I have been on the receiving end of has left me wondering where the goodness of humanity has gone, and why it is not extended to stoma patients.

Things aren’t much better once I am inside the disabled toilet; there is no sanitary shelf for me to place my stoma supplies on during a bag change, no hook for me to hang my disposal bag from.  If I am lucky there is a baby change pull down that I can use; but there are never any plastic/tissue covers for me to place on it before use, so again there is the hygiene issue.  More often than not the only surfaces I have to place my stoma supplies upon are the cistern of the toilet, on the toilet floor or in/on the sink.  I stand trying to figure out how to handle this bag change; do I lay my coat on the floor and place my supplies on it?  Do I place everything on the cistern lid and pray nothing falls into the toilet?  Do I place everything in and around the sink, and constantly try to catch things as they roll off the side?  Do I use the top lid one of those large bins in the hospital cubicles? Or do I just internally scream “damn it all to Hades”; cut my trip short and go home, or sit in the car-park changing my bag while people walk past staring all the while trying to figure out what the hell that thing on my belly is and risk arrest for defecating in public?  It doesn’t matter what I do; I am always challenged and harassed, even on the way out of a disabled toilet people pass loud judgment upon me, “how dare I be in there”. My radar key and disability ID/urgent need toilet cards make no difference: I am told I have taken my grandparents radar key, and that my card “is obviously fake”.

What are my options here?  Do I do as my late cancer-buddy did, apologise, run away and cry, refuse to leave the house again for fear of a run in with a bigoted idiot? No; that’s simply not my style, I hurt just the same but find my anger comes to the fore and that inner-ninja who kept me fighting through cancer and its insidious treatments comes out to play.  I challenge these people right back; I will not go quietly, I will not withdraw from society and hide indoors.  I will make my voice heard, and I will not stop.  I will confront the baseless accusations they hurl at me; I will flash my bag, and watch the blood drain from their faces as they realise they have bitten off more than they can chew – I aim to give them some serious indigestion.

But this is not enough for me; until there is a much larger shift in governmental policy and societal ideology, stomites will continue to face discrimination and humiliation when trying to access disabled toilets.  To try and effect a change I have started the government petition ‘Place stoma signs on disabled toilets and add stoma changing facilities within’.  All I ask is that the petition is signed and shared as far and wide as possible; even if you don’t agree with my reasons or cannot relate to my experiences, please sign and share so at the very least disabled toilets will be modernised to include a stoma sign on the door, and a shelf, a mirror and a hook within

The Bladder and Bowel Community are supporting my campaign to highlight the need to improve facilities and access to disabled toilets for stomites. Join the campaign by signing this petition. The deadline is 12th April 2018

Author – Natalie Toper

For updates follow me on Twitter: @nattoper