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Out and about in the community with profoundly disabled adults can have you desperate for change in more ways than one!
I have just signed one of those online petition things, although I know it will render me inundated with more and more random causes to support over the next few months. You see, although I can usually avoid getting drawn in to these initiatives, this one really hit a nerve.
I was prompted to respond to it after helping a single dad to get his five-year-old daughter to the loo in a department store at the weekend. He couldn’t enter the ladies powder room; she couldn’t be expected to witness the horrors of a row of urinals in use. I gamely offered to wait outside the toilet door in the ladies and ensure she could reach the washbasins afterwards. This brought back single parent memories of my own kids, as well as some uncomfortable ones from my days as a learning disability nurse.
I have experience of having to lay an adult male service user on the tiles of a ladies loo and assist him to change his continence pad. This was a last resort; we had posted a colleague at the door of the toilets to detain anyone coming in while we tried to preserve his dignity. We lay down a blanket and towels and supported his head with a coat. But it was grim, humiliating and undignified.
Another time I had to assist a more ambulant but rather large service user to sit on and get up from the toilet, in a cubicle so small that both of us risked being stuck in there for the day. The only solution was to have the door wide open, and this time I protected Marjorie’s dignity by yelling, “excuse me!” at the top of my voice whenever a member of the public entered.
I imagine there are many of you reading this now who have their own horror stories in this area, such as asking for the disabled loo and being shown to a slightly wider ordinary lavatory with a helpful handrail and tantalising red cord that your service user delights in yanking. Or having to utilise the rear seats of the minibus with a row of cardigans over the windows. Or worse still, having to support someone knowing they were wet and uncomfortable.
Help to challenge
Changing Places is a consortium that campaigns for accessible facilities to be provided to enable everyone (EVERYONE) to use a public toilet if they need it. Their campaigning has made lots of local councils build or convert fantastic resources in high streets, at beauty spots and attractions, so that people caring for vulnerable adults can ensure they are able to really enjoy a whole day out.
These successes make it a joy to be able to visit places such as Swanage, or Nottingham, or Cornwall. The Facebook page of Changing Places gives lots of information on where you can go and ‘go’ in comfort.
But there is still work to be done, hence the petitioning. Recently, the consortium lobbied Welcome Break whose service stations are anything but accessible and the response was anything but welcome. More people need to be aware that change is possible if enough of us shout loud enough. Hitting companies like this one where it hurts, through boycotts, demonstrations and social media can only help raise awareness and push through improvements.
I don’t ask you to sign up – that’s your choice. But if any of this has resonated with you, then have a look and consider whether you feel strongly enough to step up to the fight.
Ginny Tyler – QCS Expert Learning Disabilities Contributor