One person on the forum is a great champion of stoma awareness and wears clothing with stoma awareness slogans etc. She says everybody she knows is aware that she has one, and it's not a problem. Another member said she thought it was a shame that this had to be a "private club."
A generation ago, disabled people were hidden away, and it was rare to see a wheelchair user out and about, and people tended to be quite shocked. Nowadays they are two a penny, and much has been done to make that possible, with accessability awareness, although there is still a great deal to be achieved. People are much more aware these days of medical matters, and most people have access to the Internet, and there are many TV programmes about such things. There are still some ignorant people about, of course, who persecute the handicapped with their old-fashioned and discriminatory attitudes, but speaking from my own experience on the receiving end, most people have a lot more understanding, and make allowances, and are generally very helpful and friendly towards the likes of me, who simply get about in an alternative fashion.
Most of the problems experienced by disabled people come about because their particular disability is invisible. One constantly hears of people being wrongly accused, and discriminated against, for using disabled toilets and disabled parking spaces, because they "look normal." I have experienced some of this sort of thing in the past, before my disability became more visible and my mobility aids became a badge of approval. When I was little, I had a teacher at my first school who wore two pink hearing aids which were very visible, and had wires attached to two boxes pinned to her clothing. This was the only sort of hearing aid available in the 1950s, and everyone could see she was deaf. Deafness is not something to be ashamed of and hidden away, but today, hearing aids are so small, and so darned discreet, that you cannot tell who is deaf and who isn't! If a deaf person doesn't hear what is said, and either ignores the other person or answers inappropriately, they are often discriminated against, and judged as being "stupid." Some children's hearing aids are made in fun colours and patterns, and are more obvious. If the disability aid is visible, no explanation is needed, and allowances can be made. And if they are visible, why should they not be attractive? I decorate my wheelchair and every time I go out, I get smiles and lovely comments, leading to enjoyable conversations with total strangers, and they go away with a smile on their face and often such remarks as "You've made my day."
The only difference between ostomates and the normal population is that they poop from the front instead of the back, even if they have to go through a lot to get there. As the forum member also says, we have had to face a great deal of suffering and fear, of things like cancer, before we get our stomas, and to get to that point is something we should be very proud of. She says we should wear our bags with pride!
The bags are very discreet. I have an online friend with a temporary colostomy, and the first thing she said to me when she and her hubby came to visit recently was, "You can't see anything, can you!" It's true - I couldn't. She was reassuring me. However, perhaps that is part of the problem. They are so darned discreet that you cannot tell who has one and who hasn't, and this perpetuates the "secret club" attitude and prevents true stoma awareness, where this problem is openly accepted in society. My stoma nurse mentioned a couple of times at my last appointment that it was "sadly often" that she had to go through this procedure with people - the problem is clearly on the increase. Since I got on this bandwagon, I have heard numerous anecdotes from friends about people they know who have stomas, and who manage very well with them and live a full and normal life after their surgery - all very encouraging for me!
Perhaps if we all wore our bags on the outside, this would become as normal as seeing people using wheelchairs! We could put attractive covers on them to co-ordinate with our clothing so that they didn't look quite so much like medical appliances, much in the same way as I decorate my wheelchair to reflect my personality. People would eventually get used to this, and it would become a much more acceptable part of daily living and people would make allowances for the need to get to the head of the queue for the loo, for instance. Why are we all so embarrassed about going to the loo anyway?
If attitudes were to change, awful things like this could perhaps become a thing of the past:
Someone commented that if a baby's nappy leaked, the mother would hardly be asked to leave the bus!
Anyway, this is just me thinking aloud, and I am sure that because of current attitudes generally, most people reading this will probably be throwing up their hands and saying, "No way!" and I expect that we will all go on hiding our bags and being very discreet, and being very good, not telling people we've got one, and attitudes will continue not to change. Oh well.
Saturday 20th June 2015
Ostomy Awareness in Japan
Someone has just posted this on the Inspire Ostomy forum, photographed at Tokyo Narita Airport.
Tuesday 30th June 2015
A Poem by Babby8 on the Inspire Forum, on Loving Your Stoma
I said Ah, God! What have I done
That Thou hast disembowelled me
And left me here to live?
I feel as Job, my life is gone before my eyes.
Thou humblest me in my own mire
With hope most gone.
Thou hast begotten me an idiot child
In my latter years, who needs me every hour
And will not grow out of her condition.
I clean, I wipe, I clean again. Ah, God!
Is this my life, to care for her both night and day?
She tells me what I can and cannot eat;
What clothes to wear, what times to keep.
She gurgles like the infant that she is;
I can but sigh. And yet, so pink and almost fair
She is a wonder; and I must declare
I learn, I learn from her.
She is my family, my closest kin anon!
A blessing, first disguised in pain.
I smile. I feel love grow, and realise
No parents ever left their child unnamed.
I whisper Tommy, and her gurgling call
Binds me in healing gratitude to her.
I thank thee, God. I thank thee dearly now.
Tuesday 15th September 2015
Ostomy Awareness Calendar
A friend has just sent me this link:
about a group of ladies with stomas (all had bowel surgery as a result of Crohn's disease) who have got together to produce a calendar of them posing in pretty lingerie and showing off their bags, all in the name of promoting stoma awareness, and to show that they can still be attractive and that their lives still go on.