There are some areas which are taboo subjects when talking about women and disability. There are issues which are spoken about in hushed terms or not even recognised as a physical let alone emotional and social problem. We want to address one of these issues – the area of incontinence. Incontinence means the inability to control bladder and/or bowel movements.

We are both women who have disabilities and who have experienced the embarrassment of feeling that we are the ‘only ones’ with this ‘problem’, and the isolation that this leads to, denying to ourselves that we had a problem, trying to pass as if there was nothing different about us compared to our peers and not knowing where to go to seek information or how to bring up the issue. Even if we could confront the ‘problem’, our access to information is very limited. There is not much literature available on the subject even if you find you have the courage to find out about bladder or bowel control. For those of us who are partially paralysed, have muscular atrophy or other similar disabilities the literature is sparse, full of jargon and very clinical.

One of us has a non-progressive partial paralysis and curvature of the spine. This paralysis occurred at the age of fourteen after major spinal surgery. The other has a progressive neurological disorder which has resulted in some mobility problems, some muscular atrophy and co- ordination problems. It began around the age of fifteen and has had a fluctuating effect on sensation and motor control.

It was difficult to decide how to approach this topic. We eventually decided that a conversation-type discussion was the best format……..

Are you affected by a lack of bowel and bladder control and how do these affect you?I have mainly bladder problems. Most of the time I wet my pants although usually it is an uncomfortable dribble.

Are there times when it is worse?Yes, usually just after menstruation when bowel problems also can occur. It gets worse when I get run down and I have to wear pads at this time.

What about your bowels?
I really worry about my bowels packing up. I am concerned that I will lose bowel control. I think that it is more socially unacceptable. It can make you more dependent – that is you have to change your lifestyle to accommodate when your toilet routines occur. It can also make you more sexually anxious and more aware of whom you’d choose to live with. You have to struggle that bit extra against society’s attitudes and your own, to seek independence.

What happens to you?
‍I’ve had both bowel and bladder problems. The bowels are less of a problem now because I’m on a high fibre diet. I used to have to gear my life around my bowel movements. I’d only go once a week after using laxatives and I’d have to spend that day in the proximity of the toilet Now I go much more regularly and I feel more in control, however I can’t hold on at all. I have to go immediately.

How did you feel about having to create a day where you had to stay near a toilet? Did you have to make excuses?
Yes, I pretended that I really liked having a day to myself on the weekend which on one level was true. I’d hoped to have the day to myself so that I wouldn’t have to lie about having the runs or sneaking out to the toilet and hope the other person did not notice how often or how long I was gone for. It just seemed too embarrassing to confront.

What about your bladder? How often do you have problems and do you deal with it in a similar way?
I guess that I have different ‘problems’ with my bladder. Depending on the time of my menstrual cycle I seem to have more or less control over the ease of urinating and the amount that I urinate. I am sure that there is a pattern but I have never really worked it out. I know that I retain a lot of fluid just before I start to bleed and then I tend to piss a lot.

You have mentioned that occasionally you’ve been unable to control your bladder completely which then makes the problem visible. How do you deal with this situation?
Sometimes I have been able to get away without people noticing. My peers really don’t think of someone our age wetting themselves so a dark patch on dark jeans will go unnoticed until I can get away. But there was one time in the main street of Adelaide where I was walking with a friend. It was a very close friend, but this was an area we had never talked about. I knew that I was not going to make it to a toilet and I didn’t. Other than wanting the ground to swallow me up I had to tell her. Of course I had on light jeans that day!

Was your friend supportive of you in your plight?
I guess I did not know what I expected my friend to do. There’s something humiliating about wetting yourself but she was not hassled by it and more importantly it didn’t change the way she saw me as a friend either. She was just curious about it and asked me why it happened and how I’d got away with it for so long. We had to meet up with another friend who was really supportive. It was a relief in more ways than one.

Do you want to say how you’ve found your friend’s attitudes?
I was lucky because a close friend of mine also had bladder problems but her condition was quite common. She’d had some kids and this was a resulting side effect. She found she could have an operation to help her, but I can’t. We joked about it at first although she saw my disability as being more serious because I had bladder problems.

Have you told many people about it?
It’s funny because I mentioned it to another disabled woman who I was friendly with and she also said she had the same sort of problem. Also the woman I share a place with, she sort of found out because of the amount of underwear hanging up in the bathroom. I’ve been surprised at the number of women who’ve identified with the problem. I guess I didn’t think I was the only one but I’d only really associated it with people in wheelchairs or elderly people.

Do you think there are problems associated with this?
Yes, I think that there are a number of social problems that arise. For instance, fashionable dressing. I can’t wear fitted jeans because they become too uncomfortable. They can rub and cause rashes and are a real hassle to keep washing. I have to watch what I drink – especially alcohol. Alcohol not only makes me go to the toilet a lot more frequently but it also weakens my muscle control further.

Yeah, I’ve had some pretty drastic times at disco’s. How have you dealt with the problem?
One concrete way is to wear pads. Also, I went to a woman doctor who was sympathetic but not very constructive. I’ve also changed my diet. When I’m out somewhere I always check out where the toilet is. Personally I think talking about it with other disabled women has helped me to ‘come out’ and not feel so negative about it. Incontinence is not talked about enough so doctors or paramedics don’t realise it is an issue to be dealt with. I think that talking about it to close friends and other disabled women has been a real relief. It’s still an issue that I find difficult to talk openly about but I feel that I am getting there. It’s something that I have learned to adjust my life style to and I don’t feel I have to make too many compromises because of it. Incontinence is a particular area where women are made to feel that it is their problem alone rather than a problem of social attitudes. For too long women with disabilities have been made to believe that their incontinence is an individual problem; that is unique. We have suffered guilt and feelings of fear and isolation because we thought that we were the only ones. The issue of incontinence, we believe, is very closely associated with evaluation of body image and sexuality. We see this article as a starting point for discussion. It is an attempt to educate women with disabilities and other people to reassess their values. Through a re-evaluation of attitudes towards taboo subjects we hope to be able to confront some of the taboos that have kept women and particularly women with disabilities oppressed. It is time!

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This story first appeared in Women and Disability – An Issue. A Collection of writings by women with disabilities. The booklet was produced by the Melbourne based Women with Disabilities Feminist Collective in the late 1980’s. The exact publishing date is unknown.