In this blog post, disability blogger and Living Life to the Fullest co-researcher Carrie Aimes shares her personal experience of having a suprapubic catheter. Carrie speaks about the inadequacy of public toilets, and her lived and embodied experiences of having a catheter. Fittingly, this post comes at the same time as the publication of a new report that has emerged from an Arts and Humanities Research Council (AHRC) funded project, Around the Toilet (AtT).
The report – A research project report about what makes a safe and accessible toilet space (Slater and Jones, 2018) – details the experiences of a wide range of people including those with health conditions, disabled people, parents, and queer and trans people, who are often left restricted, unsupported and discriminated against by inadequate toilets. An extended version of Carrie’s post (below) is available on her website Life On the Slow Lane, see here.
Have you ever looked at a disabled person and wondered how they go to the loo?
I am physically disabled (Ullrich congenital muscular dystrophy) and have, in fact, asked this question myself many times over the years. As a wheelchair-user unable to weight-bear, toileting was always my biggest obstacle. Believe me, I’ve tried every method, technique and contraption available. But if you can’t stand or transfer, HOW do you do it?
Most wheelchair-users require the assistance of at least one other person to hoist, transfer or manually lift them. From experience, I can tell you this is time consuming and challenging enough when in your own, fully adapted, accessible home. When out and about, going to the loo can be an absolute nightmare!
Public facilities for disabled people are vastly inadequate. Bathrooms are barely big enough to accommodate a manual wheelchair, let alone a powered wheelchair plus carers and the necessary room to maneuver. They are often used as storage cupboards, occupied by cumbersome baby-changing equipment and the litter covered floors are filthy. This lack of consideration and basic adaptions in disabled toilets means that many are forced to lay on these dirty floors in order to be dressed and undressed. It is degrading and wholly undignified.
In October 2011, after careful consideration, I elected to undergo medically unnecessary surgery (on the NHS) to insert a suprapubic catheter (SPC).
I have always had full sensation and an otherwise healthy, fully-functioning bladder. Despite a lifetime spent severely restricting fluid intake and holding the need to urinate, I thankfully never suffered from urinary tract infections. I was not physically incontinent, rather socially or environmentally incontinent, since public toilets fail to meet my practical needs.
Following many requests for information and advice, I have written about my personal experience with a suprapubic catheter. Please refer to the document here, which you are welcome to download and print as required.
*Disclaimer* This is my experience only, and in no way represents that of any other person(s).