Thousands of disabled children and adults in the UK have continence issues and as a result of their disabilities cannot use a toilet at all or require a hoist in order to do so.
My son Brody can't use a toilet and is still in nappies. At 4 years old he is far too big for a baby changing table. But what's the alternative?
The toilet floor.
Our car boot.
And sadly, we share this dilemma with thousands of other families.
I started campaigning for Changing Places and Space To Change toilets earlier this year, after starting a bigger nappy campaign. I wrote a blog about the issue, which was front page of Mumsnet Bloggers Network and blog of the day on Tots 100. It appeared on several sites and had thousands of shares. But I'm not telling you this to blow my own trumpet. Not in the slightest. Because trust me, the notes on that trumpet would be completely flat. It really made no difference. What so ever. For a brief moment I naively thought that perhaps it would help sway some minds. Don't get me wrong, I didn't think a simple blog would change the world, but I had thought when starting out campaigning that surely it would be simple to change opinion and perhaps get this issue in the media. I mean this issue is huge and its 2016! Surely equality and accessibility is championed these days. But I was so wrong. And boy do I feel foolish.
I really don't understand why this issue isn't newsworthy.
It's actually quite depressing how little the world cares about accessibility and accessible toilets. There are so many campaigners doing all that they can to encourage and promote Changing Places and Space To Change facilities. They write amazing blogs and articles, they contact businesses near and afar and they shout - constantly - from the rooftops of Facebook and Twitter. They are a collective force but sadly for some reason it isn't enough to put an end to this problem. Get the movers and shakers to actually take notice.
Campaigners do all of the things that you could imagine and more. From tweeting celebs who might be able to raise the profile on this issue, like Katie Price (sadly, she's not listening), to starting petitions that attract thousands of signatures. You name it; they've no doubt tried it - at least once.
Every time there is a toilet based issue in the news, campaigners jump on it. Recently, This Morning did a piece on whether or not it was acceptable for parents to allow their child to use a potty in a restaurant. Regardless of whether this is right or wrong, we took the opportunity to bombard the comments section with why it is unacceptable for disabled children and adults to have no adequate toilet facilities. We do this kind of thing all.the.time. And we rarely get noticed. If we do, it's no doubt by our Facebook friends who are unaffected by the issue and who quite possibly roll their eyes us whilst muttering "give it up!"
But we can't give up. This is very much our reality. And we need the world to change. We do this for our loved ones because it's an appalling position for them to be in. And they don't have the voice to shout about the injustice of it all. As their parents and carers you better believe we will fight for them - and for others too.
This isn't right. It's not fair.
How is it okay for society to think that it's acceptable for me to change Brody on a toilet floor covered in over 77,000 germs?
Maybe some people agree that it isn't, but it doesn't affect them so they carry on with an out of sight, out of mind attitude. Maybe it's because there is a (relatively small in the grand scheme of things) financial cost to my sons needs and he isn't worth that much to them.
Campaigning is an uphill battle and I am so grateful to everyone who takes the time to do it. To my campaigning friends - thank you. To everyone who campaigns - thank you. It's so sad that this - a basic human right and something people should be able to do with dignity - is something we actually have to fight for.
If you are reading this please help us campaign. There are so many ways that you can. You can sign this petition. You can share this blog or any other blogs that you read about accessible disabled toilets. You can tell businesses about this problem and ask them to consider installing these facilities - there is never any harm in asking! Maybe you will make all the difference.
Never believe that a few caring people can't change the world. For, indeed, that's all who ever have (Margaret Mead).
This blog was originally written for and published by Firefly Community.