Using disabled toilets isn’t always as straight forward as it should be, especially if you have an ‘invisible disability.’ One man that knows this all too well is Evelyn Michael Wood – aka the ‘bagman’. Here, he tells us about his toilet troubles and trials as an ileostoma user.
“Well, you don’t look disabled,” said the toilet guard lady. We were at a Belgian motorway service station that had only one disabled loo. I had opened the door, but not quickly enough. The toilet guard, abandoning her saucer of 50-cent coins, swooped in front of me. I showed her my Ileostomy Association Travel Certificate. She stared at it then at me before belligerently pulling the door shut. My wife said: “Try the Disability Rights card.” I did. It has my photo and looks official – I was allowed to enter.
I’m an ileostomate, which means I’m missing quite a bit of plumbing within my bowels that I used to have and most folk still do have. To rehash the old song, the mouth is connected to the oesophagus, and that to the stomach, that to the ileum, then the colon, rectum and finally the anus. Well I don’t have the last three anymore. I am instead blessed with a stoma, which is effectively an opening in my stomach that allows my bowels to connect to a bag. That makes me a happy bagman. I mean that – it is wonderful to be still alive.
Of course there are things to worry about, such as having to avoid foods I cannot eat anymore, and anything off causes an immediate reaction. But the main challenge for me is incontinence – I have no control at all – none!
Bags are brilliant and you wouldn’t know I have one if you met me, although you might wonder why I wear braces and high-waisted trousers (it is because my stoma is right where my belt used to go). As brilliant as bags are, there can be mishaps. They are a sort of ’rite of passage’ that occurs less as time passes, but there is always a risk.
My worst experience was in a M5 service station. We had stopped for a sandwich and mine must have been off because – whoosh! It went straight through and the bag could not cope. I made it to the loo, used my RADA key and was grateful for hot water and a basin.
I carry supplies with me – spares, bin bags and loads of disinfectant so no one else will suffer. I completed the rest of the journey in wet clothes and stayed in the car while my wife checked in to the hotel. She waved the room key at me and I dashed in with our suitcase, not stopping until I was standing in the shower.
I have had blowouts where I have had to use a regular toilet cubicle. That is no fun at all -, – trying to balance things on the cistern, and having to put stuff on the floor, trying hard not to look at the state of it is difficult.
The toilet guard’s reaction is not unusual, although my card defuses most situations. However, I am now an expert on disabled loos and their merits and drawbacks.
Firstly, who on earth decided to have electronic opening and closing doors. You know the ones I mean, the ones that are so slow that by the time they do shut there is an audience of slightly desperate folk trying to work out if you are coming or going and, in my case, whether I am entitled to be there at all.
Many loos lack a hook or shelf, unless it doubles as a baby changing room. Then there is the height of the basin and hand dryer. OK, I know that many users are in wheelchairs and it is right that their convenience comes first. Most of the rest of us can do some contorting to get by, but is it too modern to have two basins and dryers?
Worst of all is the flush. I will not ruin your day by being graphic, but suffice to say, that ileostomates may need to flush more than once. Some cisterns fill so slowly they must be relatives of the electric door. It is embarrassing and a potential source of friction as a building queue demands to know; “What’s going on in there?”
Restricting access to disabled toilets
The RADAR national key scheme is a brilliant idea that offers disabled people independent access to locked public disabled toilets. But it is under threat from the Internet. Search and you will easily find them on offer for as little as £1.32 to £5. They can be purchased without proof of need.
I cannot be the only disabled toilet user who has heard giggling couples within the toilet and, worse, the debris of alcohol and drug addicts.
There is a similar scheme in Europe; the Euroschlüssel, or Euro Key, but is not yet widespread. It has the advantage of only being available on proof of need. When I bought mine I had to show a letter from my GP. Maybe it is time for RADAR to make disabled toilets available only to those with a genuine need?
A little more understanding and respect goes a long way
There are horror stories of disabled people being held up at airports, unable to use the toilet in time, even those whose disabilities are obvious. As I have explained, my disability is not obvious. I therefore always travel with a letter from my GP, a recent prescription for my stoma supplies, an Ileostomy Association Travel Certificate and Disability Rights Card. Is that overkill?
Well, no. I have been searched to verify my condition and have been asked why I need to travel with “odd-looking stuff.” I never thought I say this, but I am lucky that the scar from my operation is still red and rather long. When I once displayed my bag and abdomen as instructed, I was secretly pleased to see the searchers turn a whiter shade of pale.
“Do you know what an ileostomy means?” I asked. Astonishingly, they had no idea and had not even heard of a stoma. They explained that they had to search to make sure that: a. the condition was genuine, and b. the equipment or medicine was still needed. Quite how b can be established when a is unknown is beyond me.
I will always need my equipment, which is why it goes in the carry-on bag with me. I do dream, however, that one day people with my condition will have new plumbing grown from their own DNA, and that instead of an ileostomy, they will go in for the human equivalent of a new exhaust pipe.
It’s clear from my experiences, and I am sure you would agree, Ileostomates need to join other ‘invisibly’ disabled folk in their fight for better basic facilities and greater understanding
By Evelyn Wood