It was just a little accident.
Not the nicest way for my disabled daughter B to wake, but it was soon cleaned up, and she was full of smiles once again.
Until she wasn’t.
She began sticking her tongue out at me, it’s one of the ways she communicates her needs. But it can mean several different things. So I offered a drink first. But that wasn’t what she wanted.
She still needed to go. So I organised another trip into the toilet, with the help of her hoist.
If you’ve been reading about my daughter for a while, you’ll know that I’ve been toilet training her for nearly 17 years. Surely a world record?
But it’s not always easy. She’s non verbal so it can be hard to know when she needs to go. A regular toileting schedule helps, but enabling her to get to the toilet when she needs to requires a lot of things to go absolutely right. She has very weak muscles, so anything can upset her digestive system, from less exercise, to different food, to antibiotics or other medicines.
So she does have accidents, and they upset her, they’re bad for her skin, embarrassing, unpleasant and undignified to clean up.
And that’s at home. Things are ten times worse when we’re out and about. Because even if I thought it was okay, I cannot put my daughter on a dirty toilet floor to change her nappy: I wouldn’t be able to safely lift her back up again as my back is destroyed and she is an adult weight.
There is a solution: Changing Places Toilets. I’ve mentioned them before, with good reason, because they would improve the lives of children and adults with severe disabilities in so many ways – and the backs of their carers.
All our trips out, bar one, are cut short due to lack of these toilets, we can’t go far from home, and we can’t stay out for more than about 4 hours. Every trip has to be planned carefully so she gets to use the toilet just before we leave, and again as soon as we return. It’s very restrictive.
It could be why some people who have been involved in her life don’t see the point of toilet training her at all.
Some people seem to think it’s easier to let her soil herself and change her when they can: I’m pretty sure it happened in respite and may have been why she stopped enjoying it.
Did I actually make her future life worse by toilet training her?
People mean well, but if and when she lives apart from me – whether in residential or the community – I’m afraid the succession of minimum wage care workers are likely to do the easy thing, the thing they know how to do, the thing they do for others like her. They will change her at regular intervals, and after a while she will surely get used to it, as people get used to most things.
But it makes me so sad for her that it will probably be this way once I’m gone.
Unless there are some fundamental changes made to the lives of people with severe and profound intellectual and physical disabilities.
And that can begin with providing Changing Places Toilets as a standard in every new development.
They have the potential to change lives, change attitudes, it will give those people who need them the chance to take part in their local communities, to travel further afield without always worrying about the next toilet stop. It will make severely disabled people more visible, improve acceptance, reduce fear of the unknown.
And it just might give my daughter and others like her the dignity of being able to use a toilet, instead of being left to go in a nappy.
Today is Changing Places Awareness Day: it raises awareness of the need for special disabled toilets that also include hoists and changing benches – the only kind that my daughter can easily use. They are not especially big or complicated – but they can make a very big difference to the lives of those with severe physical disabilities.
How you can support this campaign:
This link explains more about Changing Places Awareness Day:
If you have a disability or care for someone who cannot complete this themselves, please would you do this survey and explain the importance of changing places.
Finally I’ve written before about a friend’s campaign to get a changing place installed in a new major cinema development. You can support her petition here:
More about Changing Places in Ireland can be found here:
There are also a Facebook page and group: