The following piece has been written for us by a full-time parent carer. She is passionate about Changing Places and highlighting the challenges her daughter faces, along with hundreds of thousands of other disabled people in the UK. Due to the intimate nature of the topic, at the writer’s request we are sharing this anonymously, to protect the identity and dignity of her daughter.
Thirteen years ago, you entered into my life, a beautiful girl with a mop of dark hair. We went on adventures, knowing that you would be catered for, your toileting needs met with baby change stations everywhere. A whole world of milestones ahead of you, that surely would include potty training someday.
But the months passed, you couldn’t sit, never mind stand or walk. The normal journey of progression faded from our view and instead was replaced by doctors appointments, physio and so many more. The adventures continued, we still used the baby change at age two, three, four, five, six and seven.
The older you got the more I realised that this world simply wasn’t built for disabled children like you. How could it be that there were toileting facilities for you as a baby, but not now that you were grown, not even at the hospital appointments we attended?
Eight, nine, ten years old. Still testing the baby changers, pressing down on them with my hand, worrying whether they would still take your weight. Thankful, in so many ways, that your body weight remained low. If you were the average weight of a ten year old then there would be no way that I could lift you.
But then it happened, you grew too big at eleven, twelve… But my girl, you still deserved to see the world.
Trying to stand you, with you holding onto the grab rails. You not understanding, grabbing my hair, standing for a few seconds, your knees buckling, as I kneel behind you trying to change your pad, trying not to think what I might be kneeling in. Your knees give way and we end up on the floor. So it begins. We resort to other measures like trying to change your pad in the back of the car.
Now thirteen, puberty beckons. The future scares me. We struggle on our adventurous days out. What will happen when your periods start, when I might have to change you more often? Physically lifting multiple times a day, if you have a heavy flow. The lack of Changing Places toilets, with adult changing bench and hoist, in so many communities – a period poverty that nobody mentions. Everyone assumes that all women can access a loo. Will blood stained clothes add to the indignity, to the cost of disability living? And when I struggle to lift you, will it put paid to our adventures one week in four?
My child you are growing and I am not getting any younger. One day it’s possible I wont be able to lift you any more. As you grow your world is supposed to widen, but without Changing Places toilets, yours is shrinking and one day will dictate on which adventures we can go.