It is estimated that 1 in 400 babies born in the UK have a type of cerebral palsy.
Figures indicate that with the birth rate in excess of 700,000 per year there may be as many as 1,800 new cases of CP in children each year (source)
I am proud to be Mum to a very determined little boy who has cerebral palsy.
William, now 8, suffered from a lack of oxygen prior to his birth which resulted in severe brain damage and a diagnosis of CP.
Cerebral palsy is a condition which affects people in many different ways.
William is at the most severe end of the scale and his CP affects his muscle control in his whole body resulting in him being unable to sit, stand, walk or talk.
He has no control over his body and cannot make many purposeful movements. But despite this he is one of the happiest children you will ever have the pleasure to meet.
He is a very determined little boy who rarely lets his frustrations get the better of him.
We try and make sure he lives as full a life as possible and whilst he cannot do some of the things other 8-year olds do, he still has great fun and always has a smile on his face.
His disability has opened my eyes to the many barriers faced by people in the UK who have cerebral palsy and there is one major barrier preventing my son, and thousands of other people with CP (and other disabilities) living their lives to the full.
When William was little, and until he was about 4 years old, we were able to go out and about without much thought for where we were going and how long we would stay.
Sure, we had to pack special meals and make sure we had enough nappies and a change of clothes, much like you would with a baby, but it was do-able.
All that changed when he became too big and heavy to put on a baby changing unit. Suddenly we were forced to face the sad reality that people like our gorgeous son seem to be invisible to much of society.
That can be the only reason their needs haven’t been catered for when it comes to public toilets.
By public, I don’t mean council funded toilets, I mean ALL toilets available to members of the public.
To date there are only 1,033 toilets in the whole country which William can use, to put that in perspective there are 600 public toilets in The Shard alone (and William cannot use any of them).
I, naively, assumed that when William was too big for the baby changing room we would simply use a disabled / accessible toilet.
After all, he is disabled so it would make sense these toilets would meet his needs.
But, as you’ll know if you have ever snuck into a disabled toilet, the only differences between these toilets and a ‘normal’ loo is the addition of handrails, a lower sink and (sometimes) a bit of extra space.
But William cannot stand up. He can’t sit without support and he can’t use his arms to transfer himself onto a toilet, and he will never be able to.
If you cannot transfer yourself to the toilet then you’re going to need some help, either from carers or (ideally) a hoist but have you ever seen a hoist in a disabled toilet?
Luckily, William is still pretty light (22kg) so I am able to lift him onto the toilet, but once he is a fully-grown man I will have no hope of doing that and will rely on a hoist to help me.
But before I can lift him onto the loo I need to remove his trousers, he can’t stand up so my only option is to lay him down to do this.
Have you ever seen anywhere suitable for me to do this in a disabled toilet? It pains me to say the floor is our only option.
Toilet floors have an average of 77,000 germs and viruses so that isn’t somewhere I fancy putting my son, not least because he has a low immune system, something which is common amongst people with CP.
These days, if we want to go out as a family, we have to ensure that we are going somewhere which has a ‘Changing Places’ toilet in case William needs the loo while we are out.
He may not have developed many skills over the years but he does understand how to use a toilet. He is not happy to ‘mess himself’ and I wouldn’t expect him to simply because he is disabled.
Of course, this means our days out are limited. Either in where we go, or how long we can stay.
I have lost count of the number of days out that have been cut short because there was no toilet available.
Shopping baskets I’ve left in the middle of the supermarket without paying as I’ve had to return home empty handed when William was desperate for the loo.
Invitations I’ve turned down because I know there won’t be anywhere for him to go for a wee.
Many large businesses and services are not willing to provide such facilities regardless of the need (at least 1 in 260 people in the UK need a changing places toilet – according to Clos-o-mat) and until they change their stance Williams (and therefore my) world will remain limited.
He can’t go to the cinema, have a day out or even do the weekly shop with me (he’s probably relieved about that!)
Cerebral Palsy is not a condition you can prevent or cure, it is for life and it affects people in diverse ways.
But one thing that remains the same for everyone with this condition, is the need to empty the bladder and bowels.
Changing places toilets are the only place that offer a safe and dignified solution to do that.
This World Cerebral Palsy Day I want you to know how difficult it is for disabled people to find a usable toilet in the UK, and maybe help to do something about it.