Does having an ostomy mean you are disabled?

International day of persons with a disability - 3rd December 2021

This day was first introduced by the UN in 1992 to protect the wellbeing of individuals with disabilities and their human rights. This year's theme is 'Not All Disabilities Are Visible’ which teams with the work I have done in the last 2 years with Pelican and Respond Healthcare. Their Be The Change Campaign and Cardiff City Centre’s signage change on toilet facilities, meant not just a wheel chair logo but also people who appear to have nothing wrong being included. Ever since the mid 20th century, those with disabilities have been campaigning for more recognition of disability as an aspect of identity, rather than the defining feature of a person. Here's a brief overview of the timeline of the Disability Rights Movement:

The 1950s - International movement from institutionalising people with disabilities to providing those individuals with community care

The 1960s - The very first Paralympics Games is held, celebrating the sporting achievements of people with disabilities

The 1980s-90s - Many countries introduce laws that make it illegal to discriminate against people with disabilities

The 2000s - The UN holds the Conventions on the Rights of People with Disabilities 

The 2010s - Steps were taken to increase the number of disabled people working and to decrease the disability employment gap (sourced from twinkl.co.uk)

Do you count yourself as disabled? Does having an ostomy mean you are disabled? Perhaps having an ostomy is preventing you from being unable to carry out everyday tasks, and you don’t identify as being disabled as a result? I see this question being asked on peoples social media account weekly. Almost every time the answer is pretty evenly split. It seems that we aren’t too clear on where we stand. For those of us that have experienced difficulties in our physical or mental health, and have got ourselves into a better place where life can carry on with some help, we may not feel disabled as such. If you have been born with a medical condition from birth and it is all you know. If you have adapted your way of life to work around it and can hold down a job, have a partner, a family, and get around in life doing most things, you don’t know any different. Certainly where my boy is concerned who can’t remember never having a feeding tube and an ostomy bag he wouldn’t see himself as disabled at all. But what is the right answer?

As for me, I don’t identify as disabled. This is not to say that someone else in my position who does identify as disabled is incorrect. It is simply not how I see myself right now. If you were to ask me 2 years ago it may have been a different answer, but since I had my ostomy surgery I can say that my quality of life is pretty fantastic compared to before. When you have had months, years, a lifetime of chronic pain, when something comes along that changes that never ending cycle it feeling like winning the lottery. All the tablets, scans and EUA’s (examination under aesthetic) take you away from a more ‘normal’ life taking time away from your nearest and dearest and being able to earn a living which for some would be a dream come true having the opportunity to do so. I think this contributes to the feeling many report following ostomy surgery. The feeling of relief, joy, hope and a new found appreciation of life. For someone that hasn’t lived in pain the thought having ostomy surgery may be scary to say the least, but when its planned surgery that has the chance to change your life for the better its euphoric when it comes good!

The irony isn’t lost on me when when I say I don’t identify as disabled, yet I need to have access to disabled toilet facilities! But is it time we changed the label disabled toilets? Accessible toilets is what many business have changed them to, with the wheel chair logo teamed with stick people showing that you don’t just need to be a wheel chair user to need use of them. I recently did a podcast with @crohnsfighting, @keiththom2014 and @angelinatruman which you can find here. Keith hit the nail on the head when he said when emptying your bag, sometimes you can get away with using conventional toilets, however it is extremely awkward and can lead to a mess that could be avoidable. As for changing your ostomy, you haven’t got a chance of doing it in them as you need space to lay out what you need, and preferably water facilities to do a proper clean up job justice! We all agree that we don’t want to have to use them, but they are a necessity sometimes. None of us look typically ‘disabled’. I know for myself I have experienced judgement and confrontation with members of the public who can’t respect that just because you can’t see a need for the toilets use, it doesn’t mean it isn’t there. 

Whether you count yourself as disabled doesn’t really matter in the grand scheme of things. What is great is that this day opens up this conversation and gives us a platform to share our stories and connect with others. Never feel ashamed of what you are, what your needs are, and the facilities you need to use.  

Take care, Rach x