The curse of the missing loo

I’m scared of lots of things. I’m a naturally fearful person. I admit I do sometimes wrap my kids in cotton wool and I am overprotective. If I had seen some of those clowns in our village, I think that might have been the death of me. I’m petrified of flying and terrified of heights and very scared of the world that I’m bringing my kids up in. But one of the things I never even considered I would be scared of is toilets! I mean, nobody likes a dirty public loo, but it’s not exactly scary (unless you are using it alone at night, then I would think it would be pretty normal to be a bit worried). But that’s not why I’m so fearful of them.

I’m scared of toilets, mainly because the majority of them represent huge risk and danger for my little boy. He has Cerebral Palsy that affects his entire body. He is a full time wheelchair user and his disability means he is not always able to control his bowel or bladder and so he wears nappies. This means he needs an adult-sized changing bench as well as a hoist to access the toilet. Something that you will rarely find in a disabled loo.

This fear of loos is not just something that plagues my mind, it is based on the very real and harsh consequences that we have to live with every single day. If there is not a changing bench and a hoist in the toilet that we are using, then the only option is to dangerously lift my son from his wheelchair, lay him down on the floor to change him/remove his nappy, lift him onto the toilet and try to hold him steady (he cannot sit unaided), lift him back off the loo to the floor to redress him, then lift him back to his wheelchair. It is bloody hard!

I’m so frightened of dropping him. I’m so scared he will catch something dreadful from the floor. I clean everything I can with disinfectant before and after we use the floor, but you can never be sure. Can you imagine putting somebody that you love through this? It’s hugely uncomfortable and undignified for him and sometimes painful, because there is rarely enough room to do this so knocks and bumps regularly happen on the way up and down for both of us!

IMG_1719What’s even more upsetting is that my son is now scared of toilets too because of this. He is six years old and he understands everything that he has to go through. He understands that it’s not fair and he understands that those of us who do not have a disability do not have to go through this just to have a wee. He is sometimes too scared to go out if he knows there won’t be a suitable toilet for him to use where we’re going. I hate that he has to feel like this. He is a beautiful little boy whose only worry should be about what he’s going to ask Santa for for Christmas!

So this is why I campaign for Changing Places toilets (larger disabled toilets with benches and hoists as standard). Because nobody should have to be scared of going to the loo. Not in 2016. There are millions of people with disabilities who have to live with this. Not just my little boy.

We need more of these facilities. Desperately. Because the world is scary enough for those with disabilities, without them having to worry about basic necessities that the rest of us take for granted.

#phantomloos #changingplaces #spacetochange

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