The 19th of July marks Changing Places Awareness Day.
My twitter feed was awash with posts much like the ones I see myself post. Posts praising these facilities, those that were angry and frustrated that they aren’t in more places. And those celebrating that the world is starting to change for the better with regards to accessibility.
With each year that passes, these facilities become even more important to us.
Amy is 7 now. The days have long since passed that we can place her on a baby changing table for a change. I remember cringing as you see the table struggle under the pressure of her movement, even though she was just under the weight limit.
I am at that point now where we go to a “disabled toilet” to find that I can’t even maneuver her chair into the room. How is that right!? Days out are now planned around changes. I don’t want to change her on the floor of the van. my back can’t take it, and it isn’t fair on her.
I can’t imagine, as a privileged able bodied person, going anywhere and being told that the toilet facilities aren’t for me. There would be outrage if this was the case. So why should it be any different for people with mobility impairments?
To me changing places represent dignity, hygiene and comfort.
It saddens me still that such a facility is a luxury and not standard. It shouldn’t feel like a huge treat when we are able to access something with ease. Instead we are forced to either resort to something less than ideal or even dangerous, or to simply return home and isolate ourselves.
I was astounded yesterday by some of the statistics that Changing Places posted. Did you know that only 55 museums/galleries and art centres in the UK have Changing Places? Only 18 pubs and restaurants across the country are registered with a Changing Places toilet. And this is the saddest one for me - only 1% of attractions have a changing places toilet.
We are fortunate enough to have been to a few zoos with the right facilities. It makes such a huge difference to the day. It’s reassuring, it allows us to spend more time (and money!) there; it enables Amy to know that she is just as important as everyone else in the world and that her needs matter.
Have you ever sat down in the exact same position for 3+ hours?
I’m not sure I have.. Not without having a little stand or a stretch. The longer I sit the more I ache. It isn’t good for you to sit down all of the time. Changing places allow Amy an important stretch. Quite often on days out I’ll start to get what I call chair guilt. Obviously we love Amy;s chair and it’s how she gets around and accesses the world… equally, position changes are important. Otherwise why would we spend so much time doing physio, stretches, standing frame time etc. it’s important for her for so many reasons.
Sometimes when we hoist her out of her chair and lay her down, she is stuck in a seated position. Her body’s weight has been putting all of that pressure on her hips and spine. Her tight muscles (also known as spasticity) are locked, and it can even hurt her coming out of this position. The relief on her face when she realises she has freedom to roll onto her side or stretch is monumental. So it isn’t just dignity and hygiene we gain from these facilities, it’s comfort and relief too.
I am under no illusion as to why there is such a distinct lack of these facilities. I’d say the main one is money. Money is the reason for so many things. On top of money it is space. And third, I suppose it’s either ignorance or not caring. Prior to having Amy it had never occurred to me how wheelchair users navigate the issue of toilets. I had naively assumed that people could self transfer and use grab rails. Or I had perhaps also assumed a lot of people would be incontinent and maybe have a urostomy or stoma bag or something.
A grab rail and a little extra space isn’t enough for everyone.
For us we need a level access/height adjustable changing table/bed, a hoist (preferably H tracking), and lots of room for a big wheelchair and medical equipment. For others they may need a height adjustable sink, substantial grab rails surrounding the toilet etc.
A lot of people probably don’t want to think about it… but we are all one accident or incident away from becoming wheelchair users ourselves. More babies are being saved and growing to develop complex needs. We have an ageing population which comes with reduced mobility for some. There are so many reasons why these facilities are needed. I still can’t believe the local hospital doesn’t have one, but then I am told that only 93 hospitals in the UK have changing places.
I remember watching a video about a girl who had become a wheelchair user and was going on nights out with her friends. She realised on her first attempt that actually most of the good bars in her city had steps into them and no other access. I remember that look on her face when she realised that she would either have to go home, or find somewhere else and make everyone change their plans. (thankfully she had good friends and they went elsewhere). But it made me realise how we all see the world through a different lens.
Through Amy, I view the world completely differently. I don’t expect every single building to have a Changing places.. Though obviously that would be fantastic. But I do expect things to change from where we are now.
I look back and wonder how families like ours coped before. I suppose the answer is that they stayed home? Or just had to crack on as best they could.
We recently bought a second hand massage table that folds up. So if worse comes to worse, we can lay Amy on this somewhere. We don't have a portable hoist yet but I am guessing this will be added to the already vast amount of things we pack for a simple day out.
I have lost count of the times I have written to big companies about installing these facilities. I’ve had meetings with MPs. I don’t want to be someone who complains about something and does nothing about it. I have probably made something of a nuisance of myself to the local council and our local hospital. But if we don’t raise these issues how can we ever expect change?
Shoutout to all of the places out there that are showing everyone that they deserve the same level of comfort and hygiene as everyone else by installing Changing Places. I am very much looking forward to our local IKEA having them soon, as well as our science and industry museum. Amazing to see that list keep on growing.
I hope you like the picture I have chosen for this blog. I know it isn’t one of my usual “changing place photos” that I like to use. I was so happy when we found a ride locally with a wheelchair ramp on one of the carriages. Amy was a bit confused at first but after the first lap you could see her getting so excited to see us and wave again. Every child deserves to laugh on a train ride.