I am 30 years old and I have the progressive condition, Ullrich congenital muscular dystrophy. As a result, I am completely non-ambulant. I use a powered wheelchair and am unable to transfer without the use of a hoist and support from carers.
Imagine being denied the basic human need to go to the loo; being unable to access a toilet whenever you need to. Imagine having to hold in the urge all day, every day. Having no choice but to strictly limit your fluid intake to the point where you cannot risk drinking from morning until evening. Living with dehydration, impaired mental function and recurrent infections, simply because adequate toileting facilities are not made available to you.
This was my life until 2011, when I underwent medically unnecessary surgery to insert a suprapubic catheter. Of course, I didn’t want an operation, a General Anaesthetic (in itself a huge risk due to my poor lung function) or an indwelling catheter. By no means is this an easy fix, believe me! But I just couldn’t do it anymore; I was making myself ill and relied on assistance from others in order to carry out the seemingly simple task of toileting. No longer could I inflict undue stress on my body and mind.
So, I resigned myself to the only option available to me at that time; a suprapubic catheter. With this, I no longer need to transfer from my wheelchair or depend on other people. I don’t have to struggle and suffer the indignity of using small, dirty and ill-equipped public disabled toilets. But, 250,000 disabled people in the UK still do.
Often, there is not enough room to fit a wheelchair in a disabled toilet, let alone space to transfer, adjust clothing and accommodate a carer too. Baby changing facilities get in the way, grab rails are too few and carelessly installed, the toilets themselves are too low, and hoists…what hoists?!
The majority of disabled toilets I have used throughout my life have been vastly inadequate, filthy, often neglected or used for storage!
I think it’s important that there are Changing Places facilities everywhere, including smaller towns, villages and rurally as there are many disabled people (like me) resident in these locations too.
The lack of such essential facilities locally makes me feel restricted, excluded from society and considered less important.
The 19th July 2017 marked the second Changing Places Awareness Day and eleven years since the campaign began.
Each registered Changes Places toilet includes:
1. – a height adjustable adult-sized changing bench
2. – a tracking hoist system, or mobile hoist where not possible
3. – adequate space for the disabled person and up to two carers
4. – a centrally placed toilet with room either side
5. – a screen or curtain for privacy
6. – wide tear off paper roll to cover the bench
7. – a large waste bin for disposable pads
8. – a non-slip floor