The summer holidays are upon us and already I've seen numerous blogs on my news-feeds about 'how to cope' with the long summer break ' how to keep the kids entertained' etc. But what I haven't seen are any posts about how to stop yourself becoming housebound during these long 6 weeks. Because sadly that is already the case for lots of families I know, and will continue to be until the schools reopen in September.
So where are the blogs advising how to get out of the house and be part of society during these long summer days?
You may wonder what I'm talking about, why would anyone become housebound simply because it's the summer holidays.
Let me explain...
Those of us with disabled children see those blogs about 'how to cope' during the summer months and scroll on by without reading them because it's highly likely the advice they contain isn't applicable to us. We can't even get kids can get out of the house, let alone take them to the zoo, the park, the shops, McDonalds etc.
'Of course you can' I hear you cry..
Yes maybe we can, but we can't stay there as long as you can. 2-3 hours is probably the longest most families like mine can stay away from home and for many families even that isn't possible. So if the venue in question is an hour away, that cuts down the length of stay to just one hour.
Why? Because of something so simple that many of you will never have even considered it. Something you see everywhere you go but only notice when you need it, something every restaurant, cafe, supermarket, zoo and cinema has, even train stations and hospitals have one for you. You have one at home, in fact everyone in your street will have at least one, some people may have two!
What am I talking about? Any guesses?
Yep that's right, a simple toilet is the reason so many families are right now stuck at home, longing for September to come so they can leave the house!
Of course all those places I mentioned before have disabled toilets, but our loved ones are too disabled for them.
Too disabled for a disabled toilet? How is that even possible?
Let me explain, in the UK a disabled toilet is simply a larger room, maybe with a grab rail and an emergency cord and a lovely blue wheelchair sign on the door. It has nothing in it really that sets it apart from any other toilet, apart from space. But what if space isn't the main thing you need to be able to use a toilet?
What if you can't stand up to get yourself from your wheelchair to the toilet? How would you move yourself from the wheelchair to the toilet if you couldn't use your arms? You'd need a hoist, so that you could hoist yourself or so that your parent or carer could do it for you.
What if you wear a continence pad and need to lay down so you can have your carer clean and dress you because you can't stand up? Where would you lay? Your only option would be the toilet floor! Imagine that, actually choosing to put your child on the toilet floor.
The UK's disabled toilets are exactly that.. disabled. They are not working for many disabled people and this means that people are housebound or only able to be away from home for a couple of hours at a time in case they need to pee.
As campaigner, Rachel George, recently pointed out, disabled people are not new to the UK. They haven't suddenly appeared as part of some mass migration from disabled-land. They've been here all along, you probably just haven't noticed them because they don't get out much, because of the lack of suitable places for them to use a toilet.
All the places you'll visit this summer break will have put a lot of thought into planning their venue. From decor and background music to create the right ambiance right down to the smallest detail so that all your needs are catered for. Some are even advertising their venue as a site to catch Pokemon Go characters, that's how much they want you to visit!
So why are disabled customers treated as an after thought? Disabled facilities are seen as something they only do because they have to? Why are they all only going as far as the minimum standard? A standard that excludes more people than you'd ever imagine?
Don't they want our children to visit them? Don't our kids smiles count for anything? Don't our kids deserve the same experiences as yours do? Is your money worth more to them than ours is? We want to visit the same places you do, to make the same precious memories you are making this summer.
But we can't.
Because of a toilet (that sounds so ridiculous doesn't it)
So while you're out with your kids this summer holiday, spare a thought for those parents who aren't having fun at the zoo or enjoying an ice-cream at the beach simply because they can't face putting their child on a toilet floor, or don't want to risk a skin infection by leaving them in a dirty continence pad/nappy for too long.
You can help us to get the facilities we need so that next summer maybe we can come along too and our kids can have as much fun as yours are.
By telling people about the reasons we are housebound and spreading awareness you'll be helping to make a change - after all people can't change something unless they know there's a problem.
By signing petitions like this one bit.ly/toilets4all, you're helping to spread awareness online and may even help us to get parliament to listen and change the law.
And by asking the places you visit this summer why they don't have a Changing Places or hoist assisted toilet and telling them that we couldn't visit them today because they haven't got a toilet for us, you might get them to question why they've never thought of this before.
Without your help, we will continue to be stuck at home throughout the summer holidays and every other school holiday and weekend. We deserve better than that don't we? I know our kids do.