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Glastonbury toilets

I was at Glastonbury this year and for once, it was HOT!! The heat was tough but I drank plenty of (non alcoholic) fluids to stop the dreaded dehydration and having a few bag changes as the hot weather didn’t do my ostomy bag much good!

I unfortunately had a crap experience (!) with the toilets, and it was something I shared on my Facebook page, but realised I hadn’t talked about it over here.  I know that not all of you follow my social media and thought I would share it here.

“Tonight my bag suddenly filled fast, we walked away from the stone circle as we were waiting for the fireworks in search of a toilet FAST! You know those bag fills where it suddenly feels like it will pop off?!

We saw an accessible portaloo and a staff member said “this is for disabled people”. I said “yep I know thank you”

He asked if I was staying in ‘disabled camping’ and I said no. He said “you know these toilets aren’t for anyone other than disabled people right?” I said “yes I do, do you want me to tell you what my disability is?”

My husband said “you know that it’s not just wheelchair users don’t you?” My son pointed at the sign on the door that said “‘Not all disabilities are visible” 

glastonbury accessible toilets invisible disabilities

He said “lots of people might try and take advantage!” I said “do you want me to show you?!”

He eventually let me in and it was vile. Shit and piss everywhere, pitch black. I had to ask my husband to come in and hold a torch and I sorted my bag out.

We came out to him complaining to other staff members that people who weren’t in disabled camping shouldn’t be using the loos. I was mortified.

My husband went up and asked if there was a problem, he pointed out the sign and told them I had a disability and just because I wasn’t in a wheelchair didn’t mean I didn’t have extra needs. That we weren’t in disabled camping as he is staff so were in a staff campsite. They said they have to protect the loos from people who just want to use them.

Eventually another staff member said “do you have a colostomy bag?” I said yes ( then wasn’t the time to split hairs!) and he explained that I could speak to someone and get a wristband and also gave me the door code.

I’ve had to speak to a group of 6 people then another 2 to get use a toilet tonight. It’s embarrassing and humiliating. If I’d gone up in a chair and not had a wristband they would not have treated me like that.

And to have a guarded, locked toilet that was so disgusting is ridiculous. Having a larger cubicle does not an accessible toilet make!!! 

glastonbury accessible toilets invisible disabilities

A wheelchair user would have struggled massively to transfer themselves to that loo as it was filled to the brim with shit and the sides were covered in piss and shit. It was so dark in there that I couldn’t see a thing and needed someone to come and hold a torch!

I’ve done festivals for the past 20 years, I know what toilets are like, I’m no princess and totally get that they’re vile. But if you’re guarding and locking a loo and making such a fuss about protection of disabled people, perhaps make that toilet truly accessible. We can and should do MUCH better than this.”

 

I know that I really should have organised myself before, but I can’t help thinking that it really should only take some common sense.  I understand that people have a job to do, but going to an accessible toilet isn’t some kind of luxurious experience that people are going to lie about, surely?

There seems to be an obsession with the checking of disabled people and their toilet habits, so many questions to just go and have a shit and till you have stood with crap running down your legs waiting for another human to decide whether you should be allowed to go to the toilet, then it may be hard to understand just how humiliating, upsetting and degrading it is.

I will never stop shouting about this…

 

Sam xx

A day of firsts…

A day of firsts and not all good ones Im afraid.

The day started at 4am when I woke to find my bag had somewhat exploded…  Im thinking making it three weeks before having a full blown blast out is good though, yes? Poor old Timm was woken up and helped sort me out and get me in the shower whilst he did a full bed strip and got some washing on.  I know this is gross, but it’s life for someone with a stoma so I thought it was important to share.  Basically my bag was completely filled with air and so all output was forced out of the sides of the flange (best word ever)… Not a good start to the day.

Anyway this morning my lovely friend Caroline took me into Sheffield for a bit of shopping.  Its the first time I have been out without Timm in a month so it was a little nerve racking but lovely, we went to the Forum for brunch and it was just so nice to be out as a ‘normal’ person.  We chatted, shopped and were generally just a bit giddy.  Ive not had enough giddiness in my life for the past few weeks so it was fantastic to have some time with my friend.

We did have a bit of a laugh when I was explaining to Caroline about ‘phantom rectum’ which is where despite the fact that I have no colon and nothing is connected, I sometimes feel that I need a poo… This is known as a phantom rectum – As I was giggling about the funny name, her response was “Well it does have a ring to it!” Cue hilarity…

Then comes my next first.  I went to the loo and realised I had some leakage on my bag, so I came out and used the disabled loo and my radar key for the first time! I also had to do a clean up and put a new flange and bag on in a public toilet! A bit terrifying as so far Im used to taking my time and doing it in my bedroom.  But I managed it and was just really glad I had my full pack up of products with me.  It really made me realise the importance of being able to use the disabled toilets.  I need the space, but more importantly the use of the basin in the cubicle.  Also the importance of having a spare set of everything I need to do a change.

stoma products

I got a travel bag from Fittleworth who are my delivery company for all my ostomy supplies.  Its not the most fashionable thing in the world but it keeps everything together and was a lifesaver today.  The only thing is that its quite big and so I need a large handbag to fit it in.  I have a couple of larger bags but thought it was VERY IMPORTANT that I had another… Right?? I bought this beauty today from one of my favourite shops Within Reason by The Bombay Satchel Company.

bombay satchel company bag

 

Coming home from our few hours out, I could barely keep my eyes open.  I can’t believe how exhausted I feel after doing so little.  Its a reminder that my body is still mending and healing and though I have more energy now, I really need to make sure I don’t push myself too hard.

So Im off for a nap now to recover from a hard day drinking tea, eating and shopping!!

Love Sam xx