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Why I was #FitToBurst *LIVE* on Facebook!!

[THUMBNAIL: Screenshot of my Facebook post]

On Saturday 26th May 2018 I attended a surprise birthday meal with extended family for my nephews 16th. They choose to book a very posh Indian restaurant in Walkden, Manchester called The Purple Lounge.

We had a wonderful time and the birthday boy was celebrated in style, getting to have his first legal alcoholic drink and had the restaurant staff singing Happy birthday as they brought out a magnificent Bolton Wanderers FC cake. A milestone occasion, that everyone should be able to enjoy being included in.

Yet there's 250,000 children and adults in the UK who cannot leave their home without severely limiting their fluid intake and watching the clock for the fear of needing the toilet while out doing normal things like going out for a birthday meal with family. For those 250k who cannot use a standard disabled loo due to complex needs that only Changing Places facilities cater for, leaving the house is incredibly anxiety provoking and puts a damper on wherever they go.

I'm 1 of those 250,000 who need more than just a few grab rails and an emergency pull cord. Muscular Dystrophy is a progressive muscle wasting disease that causes muscle weakness and wasting over time. Meaning you lose more and more abilities as you get older. Everything from walking, standing to swallowing, eating and eventually breathing. And yes, that means many forms are life-limiting. I lost the ability to self-transfer without the use of a hoist, a height adjustable adult size changing bench and a carer when I was 14 after I had metal rods put in my back.

[IMAGE: Collage of celebratory selfies with the birthday boy and photos of the restaurant]

That night I ordered a delicious mint leaf mocktail, which I only drank a ¼ of because I have to do 'Pee Math' in hopes I make it through any outtings without needing a wee. I had made sure I went before we left the house as always. But my bladder wasn't playing ball during the dinner. Half way through I had to discreetly tell my partner I needed to leave ASAP, get a taxi and get home to the toilet. The sad thing is the staff hadn't come out with my nephews cake yet. Family begged me to stay for 5 more minutes, so I did. Those extra 5 mins left like an eternity as I quickly went from needing to go to #FitToBurst! I pushed through, sang along with wishing Josh a Happy 16th Birthday. Got a few photos together and made a swift exit.

We popped inside the main bit in Walkden Retail Park and asked security if there was a Changing Places toilet in the area, to which he replied that he hadn't a clue. I didn't expect him to but it was worth a shot!

Outside I frantically scrolled my contacts for the number for the taxi company I usually use that I KNOW have accessible taxis. Only to be told they had none available that night. I quickly googled 'Wheelchair accessible taxis in Manchester' and rang around what came up on Google. Several had no taxis period for over an hour, 2 had accessible taxis but wouldn't get to me for 1-2hrs and the rest just rang out. It wasn't until later I overheard a couple say they couldn't get a taxi either because of it was the religious holiday Ramadan! It never even dawned on me it was Ramadan and how that'd effect taxis. In total I rang 23 numbers of local taxi firms to get me home to Bolton from Walkden, and got nowhere.

We found the nearest bus stop and I went on the Transport for Greater Manchester Journey Planner (which is a total life saver, HIGHLY recommended!) and discovered the next and last 37 bus was due in half an hour and given the fact we couldn't get a taxi, I had no choice but to hold it with everything in me in hopes we make it on this bus in time to arrive at Bolton Interchange where we could get the last 575 at 11 pm.

That's when I wrote the following status to 1) Keep me busy and 2) to open people's eyes to the Changing Places Campaign which calls for Changing Places facilities to be MANDATORY in ALL Public buildings. For nights like this, many people can't even fathom.

[IMAGE: Larger screenshot of my post which at the time of writing has 192 reactions and 145 shares]

As I said on my post, I wasn't sharing my ordeal for pity. This situation happens to me quite alot, this wasn't the 1st time I've been bursting for the toilet and can't find a suitable facility anywhere.

This situation happens to 250,000 people every single day...

We eventually arrived in Bolton at 10:56pm and went to their Interchange because they had a Changing Places toilet fitted with the new build. But when we turned the corner to face it, the shutters were down. In desperation my partner and I discussed trying to improvise in the standard disabled loo which is undignified and back breaking for him to physically lift and hold me on a standard loo, but that option was taken away too as my RADAR key failed to unlock both standard disabled toilets in Bolton Interchange. Security had already been to double lock it for the night. So apparently, you can only use those toilets from 9-5pm???

Luckily the 575 was 10mins late, lucky because of the time we wasted trying to unlock toilet doors. Eventually arriving home at nearly midnight.

I documented my journey to find a toilet and taxi along the way *LIVE* on Facebook, friends in similiar boats rallied around in virtual hugs and support. Campaigners used the experience to spread the word on how lack of suitable toilet facilities for those more severely disabled affects an Adult, whereas up until this point the media has only covered stories of disabled children having to be laid down on filthy toilet floors to be changed as they've outgrown the baby changing facilities. You can't do that with an adult! My post opened the eyes of my followers, able people who aren't in our world expressed great sadness that in 2018 there's so many individuals that don't have access to a toilet, of all things.

Last nights events will not be in vain, sharing such personal details took a lot emotionally BUT it brought about many more signatures to the Changing Places Petition which will change the lives of all individuals who need these types of facilties and That makes it all worthwhile....


[IMAGE: Collage of supportive Shares with comments from other disability Bloggers + campaigners]


Have you had your eyes open by my story?


[IMAGE: Changing Places logo which redirects you to the official website to learn more]







Disability can happen to anyone, at anytime in any situation. One day you or a loved one could be needing these facilties. Please make a difference now by signing NOW!



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I want to take the opportunity to publicly thank the following Bloggers + campaigners in the disability community that I fight along side, who supported my speaking out about such a personal matter in an effort to raise awareness. A BIG Thank you to Adam's Mum Rachel of Ordinary Hopes, MDUK Trailblazers Manager Michaela Hollywood and my blogger friends in the same situation as me Kerry Thompson of My Life, Kerry's Way and Carrie Aimes of Life On The Slow Lane. You all are truly amazing! 


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Related Blogs + News Stories - 




Disabled Boy Launches Test Case Against Theme Park Over Toilet Access - The Guardian


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This blog post is linked up with the following blogger networks;


Lucy At Home
Inclusive Home

Comments

  1. Oh, my heart goes out to you with real empathy, not pity. This has to change. People need to better understand the needs of others. Bravo to you for even venturing out. May you be well, an dmay things change. <3 #thatfridaylinky xo

    ReplyDelete
  2. You certainly opened my eyes with this post!! OH MY WORD how absolutely distressing, I'm off to sign that petition. It's really sad how something seemingly as simple as needing to go to the toilet for the majority of people has the potential to overshadow a fun night out - as it did in this instance. It would appear that most venues really need to work on their wheelchair accessibility. #thatfridaylinky

    ReplyDelete
  3. Oh Fi, this must be awful. As you say, it's such an eye-opener for those of us who don't have experience of this. Going to the toilet is just something we all take for granted. I am so sorry. I have already signed the petition and you are doing a great job campaigning and hopefully making things better for people in the future. x #blogcrush

    ReplyDelete

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