By Lizzie Deeble, Lead Volunteer, Contributor and Duchenne Mum
Last week, the government allocated £30 million in funding to install Changing Places toilets in existing buildings in England. Just a few years ago I wouldn’t have even noticed this news and even if I had it would have meant very little. I don’t think I even knew what a Changing Places facility was. Now, forget Meghan and Harry because THIS is the big news for me and my family.
Of all the challenges that my almost 7 year old son Sebastian faces at this stage of his duel diagnosis of Duchenne muscular dystrophy and Autism, the fact that he is not yet continent is one of the biggest in practical, day-to-day terms. And this is not because of his lack of toileting ability but the lack of awareness, support and facilities. Toileting is an area that even within the world of disabilities is rarely talked about.
Protecting dignity
Perhaps it is to protect dignity and I fiercely believe in that. Ironically though, the lack of awareness created by the fact that no one talks about it means that we are failing to do just that. There is very little acknowledgement or understanding of the challenges that surround toileting for people with disabilities and this leads directly to a lack of adequate provision. Which means that the dignity we are trying to protect and the privacy and respect we are trying to give is destroyed.
Previously I had assumed, as most able bodied people do, that any toilet with a “disabled” sign on it must be accessible and fit for purpose for people with disabilities. This just isn’t true at all. Most are far too small, not just for wheelchairs and equipment but for additional people and carers. They do not have changing benches meant for anyone over toddler sized. They do not have hoists to allow for independent toileting where possible. I was completely shocked to discover that toilets for people with disabilities didn’t actually provide facilities that are anywhere close to the basic needs of those who use them.
Changing Places toilets provide all of this. But they are currently few and far between and it is unusual to find one on a day out. So what does the funding mean for families like mine? Let’s put it this way – how many able bodied people even consider whether or not they will be able to use a toilet on a trip out? It is just assumed that those most basic of needs will be provided for. What if they weren’t? How would that impact your life, your activities, where you go and how long for? How much anxiety would it add to your daily life?
For us it means not having to think about where we can change him when we go out. It means not basing our activities or our destination on Sebastian’s toileting needs. It means not thinking about how long we can be out for realistically before the lack of facilities becomes a problem. It means not having to change my son while he’s squashed in the boot of our car, on a tiny changing table in the middle of a busy public toilet, on a dirty toilet floor. It means not compromising his cleanliness, hygiene and far more importantly, his dignity. It means no more quiet tears on the way home as I feel the impact of not having been able to meet his needs as I want to.
Even if he is able to become continent at some point, Sebastian’s physical needs mean that the toilet facilities for able bodied people will never be adequate for him. He will always need what a Changing Places toilet can provide. And that means that they should be provided as standard.
Frankly, there is no point in putting a wheelchair ramp into your facility if there is nowhere for the wheelchair user to go to the toilet while they are there. If we are talking about inclusion and accessibility, surely this is as basic as it gets?
Sebastian has a life limiting condition. I don’t want his life to be more limited by the fact that there is nowhere for him to use a toilet when we leave our house. I don’t want the quality of his life and that of our whole family to be affected by it. I don’t want society to disable him. I never want him to feel shame around his toileting.
I want him to know that he deserves as much privacy and respect as everyone who can go to the toilet by themselves I want him to know that his needs are equally important, and that he is seen and acknowledged in this world.
Toilets are a basic need. They shouldn’t be the privilege of the able bodied.
So this funding for Changing Places toilets is important news because finally those things are being understood. We are getting a little bit closer to the stage where a Changing Places toilet shouldn’t be a nicety, an added extra, an afterthought. It should be standard. And for families like mine, that in itself is life changing.
Rare disease day
