DISABILITY & THE SHAME -TANGO

 They say that you never forget your 'first'. First snog, first time you travelled by plane, first time you ate proper Italian ice cream...

...And the first time you buy incontinence products. 

Like a lot of aspects of living in a disabled body, incontinence has a massive amount of SHAME shackled to what, let's face it, is a) something most of us will arrive at eventually, and b) just a biological fact, NOT something connected to your worth as a human.

Babies are infamous for their leaks, smells and lack of control, but the same thing in an adult is treated as a disgusting shame.

I know I may appear to be the epitomy of  'don't sweat the small stuff ( pause to allow my own disbelieving laughter to subside), but I have found it REALLY hard to accept help, and to use each additional disability aid. As hard as it to live within a disabled body, it is harder still to tolerate the daily Tango with SHAME. 

We are brought up to be rewarded for 'looking after ourselves', 'to be independent,' and to be 'A 'BIG boy!' or 'BIG girl!'  I used to work with pre-schoolers, and we practically gave a child a mexican wave when they managed to poo without assistance!

As adults, the focus is on what we are contributing to society by working. When we are too sick/disabled to work, we are allowed to apply for social security benefits, but this is made as stressful and difficult as is humanly possible. The process is similar to one of those arcade games, with a clumsy metal claw poised high up over a heap of slippery cheques.


Asking for help feels like failure a lot of the time. This is not because being disabled is inherently Shame-ful, but because society tells us that we SHOULD be ashamed.

Need and Dignity are not a co-dependent couple- they can (and should!) operate entirely independently of one another. If we allow ourselves to be stamped as FAULTY by society, then we miss out on so much of living.

In common with many people who have physical disabilities,  I have what is known as 'functional incontinence'- broadly speaking, sometimes my inability to walk far, or with any speed, means that it is impossible for me to the loo quick enough.


I am a blushing elephant writing this, but I want to encourage other chronically ill folk to accept the aids they need without the hesitancy I have felt.

The first time I used a mobility-aid I felt a level of self-consciousness I had not felt since puberty. 

You can never blend into the background as a disabled person...

...And sometimes you just don't want to dance.


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Comments

  1. Could really relate- bladder issues are tough and its embarrassing with coworkers who never seem to need bathrooms. No privacy. We are told: there is no rest room for customers. Well, I will not be their customer, it seems. Medical procedures: bathroom I am told is down some long hallway, I cannot use a rest room in the dentists office. I never returned, traumatic. Interstitial cystitis is common with some illnesses and is incredibly painful and makes being out in public very tough.

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  2. Living with awful pain is traumatic enough without these practical hurdles as well. It is hard to go to new places with so many unknowns to navigate. Thanks for sharing your experience x

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