When disabled children grow up…

Ewan will always be Fiona’s little brother. They adore each other and love spending time together. But, at 33 years old, Ewan isn’t as little as he used to be and it is getting harder every day for Fiona and Ewan to go to fun places together.

But how do you manage to hang out in fun places with your adult brother when they need to be lifted to the toilet or to a bench to have continence pads changed?

“We have found ways of managing to change Ewan in his wheelchair but it isn’t dignified, it isn’t hygienic and it isn’t comfortable. Not for me, but more importantly, not for him.

I can’t lift him onto the floor to change him properly because I am simply not strong enough to get him back into his wheelchair (not that I would want to lie him on a toilet floor anyway) but it’s not an option.

I would think that on average nearly half of the disabled toilets we’ve tried to use we can’t physically even fit in to. So we often have to change him in the van. It has blacked out windows in the back but we just have to hope that no one can see in through the windscreen. Ewan isn’t fussed. He doesn’t mind having to be changed in this way because he doesn’t know any different. Sadly, it is what he is used to, but it means he can go out, which he loves to do more than anything.

Sadly, he is used to a lot of things he shouldn’t have to accept. Like the fact that he can’t get into a lot of shops, cafes and restaurants because they aren’t accessible. He accepts it. Because he doesn’t know any different.

As a family, we are very British, we don’t like to complain. I don’t want to be moaning the whole time about things, lack of access and proper changing places toilet facilities. I feel like I’m boring people whenever I talk about these things. I don’t want people to think that all we do is moan.

I am constantly apologising to people because we “are in the way” or if we have to move things in order to get around a shop or into a restaurant. I wish I didn’t, but I do. (I’m like that I apologise for everything when I’m on my own too).

But Ewan deserves more than that. And we have let him down. He deserves to be equal to everyone else. He deserves to feel included. He can’t speak out about these things for himself so I will. At least, I’m going to try.”

Fiona, big sister to an amazing brother.

A small red heart on a white background.Fiona got in touch after reading my blog post Some Days Are Just Hard, saying that she had been inspired to share a little of her life with her brother and I was delighted to share it for her.

I often get comments from people asking why I can’t just lift my son to the toilet. I used to be able to, till I damaged my back beyond repair and my son had spinal surgery. But, actually, lifting is never a long term solution.

Disabled children do not magically grow into adults who no longer need assistance.

They grow into adults who want to go out and live life to the full. Adults who need the same dignity when managing their toilet needs as any other adult would expect.

And this is why we need more Changing Places toilet facilities. Not just for children, but for us all.

Please sign this petition and share this request. Tell everyone that Fiona and Ewan need to be able to go anywhere and everywhere they want to go. A brother and sister should always be able to spend time together, no matter how old they are.

 

 

 

12 thoughts on “When disabled children grow up…

    1. It really is a most basic need, which should be met for all people. It breaks my heart that something as simple and fixable as needing the toilet is what traps people in their homes.

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  1. Just signed the petition. It breaks my heart reading things like this, but I will hold my hands up and say prior to having my autistic son I had never given it a second thought and presumed that all disabled toilets were adequate. Keep educating, you are making the world a better place xx

    Liked by 1 person

    1. I think most people do simply assume that those mystical rooms with a wheelchair logo on the door meet the needs of wheelchair users. I used to assume the same.

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      1. I wish they would do a TV advert / campaign for it. Everyone I have ever spoke to about it (approximately everyone I meet) has never thought of it as an issue before. Sad times.

        Liked by 1 person

  2. Read often about putting small people on the floors, my son being one. It’s frightening that I’ve never thought of him being an adult and maybe still needing to use products and where he would get changed. This is unfair on everyone.

    Liked by 1 person

    1. I used to carry a folding camp bed so that my son was always laid somewhere clean and off the floor. I used to be quite a sight arriving with my son, a camp bed, his toilet chair and a huge mobile hoist. And a carer, because you can’t manage all that and push a wheelchair. Children grow, things change and our own health can be taken away in the blink of an eye. As I write this today, I am in agony and unable to even hoist my son. It is a good job it is Sunday and his Dad is at home.

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  3. This must be so difficult. Being able to go into a shop or nip to the toilet are things that so many of us just take for granted. Don’t feel like you are moaning – you are campaigning and spreading the message to those of us who just have no idea what it is like – we need to be told! So keep going and let’s hope we can bring about some change.

    And congratulations because someone loved this post so much, they added it to the BlogCrush linky! Feel free to collect your “I’ve been featured” blog badge 🙂 #blogcrush

    Liked by 1 person

    1. Thank you. A lack of accessible toilets should not be stopping people from living full lives. My 11 year old had another sad experience today of being treated as a lesser person. So many things need to change.

      Liked by 1 person

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