Today I had planned to publish a post on how to respond to people’s questions about your recovery, which would have been the last in a blog series on recovery. You can read the previous two posts here and here. However something happened in the meantime and I’d love to share it with you. That recovery post is coming in two weeks’ time.
Maybe you or someone you know has bladder and/or bowel issues due to an illness that isn’t always visible – Ulcerative Colitis, Crohn’s Disease, Diverticulitis, Multiple Sclerosis, Transverse Myelitis, Irritable Bowel Syndrome, or another one.
Knowing where the loos are when you go out becomes paramount. It can even dictate where you are comfortable going. Because getting to a loo can become a sudden need and if there isn’t one nearby, this can be an issue. Or having the space and privacy to deal with a colostomy, ileostomy or urostomy bag, or to self-catheterise.
This is an important necessity for you. Your bladder and/or bowel don’t work like everyone else. Yet other people don’t readily know that because you look fine on the outside. So there can be the ‘do-I-or-don’t-I dilemma’ of using the disabled loo when you need it.
There may have been times when you stepped out of the disabled loo and got a funny look from someone. Or they even said, ‘You don’t look disabled!’ You may feel guilty, even though you know you shouldn’t as you have every right to use that disabled loo. But the assumption that for an illness to be valid it has to be visible is rearing its ugly head again.
You want to explain, but talking about pee and poo issues is taboo. It feels like a ‘damned if you do, damned if you don’t’ situation. That can understandably get you down when you are already dealing with an unpredictable bowel or bladder and possibly pain and fatigue too, and you are just trying to go out and have a nice time.
Well, things are starting to change for the better. Invisible disabilities are about to get more visible in a supermarket near you. Read on to find out more.
The ‘not every disability is visible’ sign on disabled toilets in UK supermarkets
Marks & Spencer advised me over Twitter they think putting a ‘not every disability is visible’ sign on disabled toilet door is a great idea and are going to do it in all of their new stores. They don’t have plans for their existing stores yet, but it’s on their radar.
This idea has also been forwarded to the appropriate team at Sainsbury’s to consider.
How did this change happen?
It started earlier this month when the Backup Trust, the charity which focuses on transforming lives after spinal cord injury (great people doing fabulous work), tweeted that Asda was putting up a new toilet sign in its stores. You can read that article here.
I thought, ‘What a fabulous idea!’ and ‘Are the other supermarkets doing this?’ So I tagged Marks & Spencer, Sainsbury’s, Tesco and Waitrose in a tweet and asked.
A week later, Marks & Spencer tweeted me saying they were going to adopt the idea!
I got busy on Twitter after that tweeting Sainsbury’s, Tesco and Waitrose.
Sainsbury’s came back to me saying the idea has been forwarded to the appropriate team for their review.
Waitrose and Tesco haven’t yet responded. In the meantime, I went to my local branch of Waitrose and chatted to a departmental manager Helen. She liked the idea and said she would forward it on to headquarters. Let’s hope she did!
What I learned regarding making change happen
Twitter can be a powerful vehicle for initiating positive change. With one tweet, Marks & Spencer is changing their approach to invisible disabilities across the UK. That’s pretty cool.
It reinforced how important the following saying is: If you don’t ask, you don’t get.
We can help make the change we want to happen. We need to make our voices heard. We will each do that differently. Some of us will tweet, some of us will request our MPs face-to-face to make a change, others will promote their drawings of an issue they care about, or maybe write a letter to the CEO of an organisation. There are so many ways we can make our voices heard in a way that is comfortable for us. The key thing is to do something.
Get involved and make a difference
If you want to get involved to move the #AccessibleLoos4InvisibleDisabilities campaign forward, there are several ways you can. Select the one that you are most comfortable with.
- Tweet about the need for #accessibleloos for #invisibledisabilities. Include your condition and the accessible loo photo above. Tweet to the shops you frequent most, your MP, famous people, friends, family, etc. Ask them to retweet.
- Share the accessible loo photo on Facebook and ask your friends and family to share.
- Download the accessible loo photo or create your own and take it to the nearest shops you frequent. (Feel free to take out the hashtags or include your own.) Ask the store manager if they would be happy to put it on the disabled loo. (bring cellotape with you)
- Send the accessible loo sign to the CEOs of Sainsbury’s, Tesco and Waitrose and request it is put on disabled loo doors. Also send it to other shops too like John Lewis, Debenham’s, your favourite retailer or restaurant chain.
- If you have family or friends who work in in large retail companies or restaurant chains, ask them to share the idea with the people or teams who make such decisions. Such companies may have a scheme whereby employees can offer ideas and if they are implemented, the employee is recognised for it.
If you have a different idea, go with it. Together we can get the #AccessibleLoos4InvisibleDisabilities going faster and wider and break down the stigma of invisible disabilities and the taboo of bladder and bowel issues.
What’s it like for you?
What has it been like for you if you have an invisible disability and used the disabled loo? Have you experienced issues or has it been ok? And do you have other ideas for advancing the campaign of #AccessibleLoos4InvisibleDisabilities? Share your experiences and thoughts below by leaving a comment.
If this blog has sparked something inside you and you would like to explore how you can make a change in relation to the assumptions and stigmas attached to your illness, have a look at how we can work together and get in touch for a free no obligation consultation.
Pass it forward
Although these blogs are written in the context of living with serious illness/injury or a chronic condition, the ideas contained within are applicable to everyone. So if you think a friend or family member would benefit from reading it, or you just want to share it with the world, share this post using the icons below.
I have started to research the concept of ‘acceptance’ within the context of long-term conditions and serious illness/injury. If you or a loved one experienced the onset of a long-term condition or serious illness/injury in the past 2 years and are struggling or wondering with what acceptance means for you, I would love to speak with you. Click here to find out more.
© Copyright Barbara Babcock 2016