THE BLOG

The Invisible Disability

24/07/2017 16:56

everybody

"Well you don't look disabled," said the toilet guard lady. We were at a Belgian motorway service area that had only one disabled loo. I'd opened the door, but not quickly enough. The toilet guard, abandoning her saucer of 50-cent coins, swooped. 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, looks official and I was allowed to enter.

I'm an ileostomate, which means I'm missing quite a bit of the plumbing that I used to have and most folk still do. To rehash the old song, the mouth's 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 blessed with a stoma and that makes me a happy bagman. I mean that - it's wonderful to be alive.

Of course there are things to worry about, foods I can't eat anymore and anything off causes an immediate reaction. But mainly it's the fact that I'm incontinent - no control at all - none! Bags are brilliant and you'd not know I had one if you met me, although you might wonder why I wear braces and high waisted trousers (It's because my stoma is right where my belt used to go). As brilliant as bags are there can be mishaps. It's 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 centre (what is it about motorway service centres?). We'd 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 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 into the hotel. She waved the room key and I dashed in with our suitcase, not stopping the dash until standing in the shower. I've had blowouts where I've had to use a regular cubicle and it is no fun at all, especially trying to balance things on the cistern and having to put stuff on the floor trying hard not to look at its state.

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 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 you should be there at all. Inside, many lack a hook or shelf unless doubling as a baby changing room. Then, there is the height of the basin and hand dryer. OK, I know that many users are wheelchair bound and it's right that their convenience comes first. Most of the rest of us can do some contorting to get by, but is it beyond modern wit to have two basins and dryers? Worst of all is the flush. I won't ruin your day, but suffice it 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's embarrassing and a potential source of friction as a building queue demands to know, "What's going on in there?"

The RADA key scheme is a brilliant idea that is under threat from the Internet. Search and you'll find them on offer at prices from over £5 to as little as £1.32 and without proof of need. I can't be the only user who has heard giggling couples within and worse, the debris of alcohol and drug addicts. There is a similar scheme in Europe; the Euroschlüssel is not yet widespread, but it has the advantage of only being available on proof of need. When I bought mine I had to provide a letter from my GP. Maybe time for RADA to change the locks and make disabled loos available only to those with a genuine need?

There are horror stories of disabled people being held up at airports, even those whose disabilities are obvious. As I've explained, mine is not and I always travel with a letter from my GP, a recent prescription for my stoma supplies, an Ileostomy association travel certificate and Disability Rights card. Overkill? Well no. Indeed, I have been searched to verify my condition and why I needed to travel with odd-looking stuff. I never thought I'd say this, but I'm lucky that the scar from my operation is still red and rather long. I displayed bag and abdomen as instructed and 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 never heard of a stoma either. 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 and it goes in the carry on bag. I do dream, however, that one-day people with the condition I had 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.

Ileostomates need to join other 'Invisibly' disabled folk in a fight for better facilities and understanding too.

HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We'll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.

We'd love to hear your stories. To blog for the section, please email ukblogteam@huffingtonpost.com with the subject line 'EveryBody'. To flag any issues that are close to your heart, please email natasha.hinde@huffingtonpost.com, again with the subject line 'EveryBody'.

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