Tag Archive for: #MoreThanMeetsTheEye

When you can’t hold it…

I have seen two stories today about different situations where institutions have put rules in place regarding toilet breaks and it really got me thinking about how distressing this can be for those who can’t just hold it.

The first was regarding comedian Frankie Boyle and how his shows have put restrictions on people leaving the auditorium during his 70 minute show.  Security staff at the King’s Theatre in Glasgow were ordered to escort fans to another part of the building until the performance was over if they left to use the bathroom.  According to the Mirror, the general manager James Howarth said “The show is only 70 minutes long so it’s not an unreasonable request.”

The second story was about St Teilo’s Church in Wales High School in Cardiff that sent out text messages telling parents their children must have a doctor’s note if they want to go to the toilet regularly during lessons.  It said: ‘If your child needs to be allowed out of lessons to go to the toilet then please provide a medical note in the next week so they can be issued with a pass.’

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Now I understand that disruption of shows or classes can be annoying to others, but as a person who regularly has to use the toilet and can’t always hold it, believe me, it is more annoying to me than anyone else! I have two different view points on the two stories though.

Regarding the show, it is just so disheartening to know that these rules are in place, though it isn’t great to disturb a show, it is sometimes a necessity.  There is nothing that sets more fear into my heart than the idea of being unable to get to a loo in time.  Take off and landing during flights make me sweat because as soon as I hear the words that the toilets are out of bounds, my stomach churns, my guts cramp and my body panics!

Rules like this exclude people with bowel or bladder conditions from these social occasions.  They increase anxiety and add to isolation.  If you struggle with toilet issues and need to go regularly, then it can be very difficult to mentally deal with being out in public and if you cannot access toilets with ease then it can rule out certain events altogether.  The quote from the manager REALLY pissed me off. It IS an unreasonable request to expect some people to not be able to use the loos for over an hour.  Every theatre/comedy/music show I have been to also tend to have huge queues so leaving it as long as possible just isn’t an option when you know you could end up in a 20 minute queue afterwards.

Invisible disability is everywhere and there are many people with needs and issues that can’t be seen easily and these people shouldn’t have to explain to a theatre attendant their complex medical needs.  Places need to be more inclusive not be excluding people based on disability.

The school story initially upset me a lot more.  The idea of kids having toilet access restricted was quite disturbing as children with bowel or bladder issues have a hard enough time as it is let alone having to produce a doctor’s note.  But in reading the story I think it was just a badly worded text with a genuinely caring message at heart.

The school appears to be putting into place a system where those who have genuine medical issues can have the ability to go to the toilet unchallenged as the school will know which kids have a need to go.  It must be very difficult for teachers to know who is really needing to go and who is doing it to waste time/mess about.  I remember when I was at school that a toilet break was often used to go for a wander/grab a drink/raid the chocolate machine/chat to my boyfriend… (Don’t tell on me!!!)

I suppose the problem with this is that some kids may develop symptoms of illness and need to suddenly go often and without a doctors note they may not be believed.  Children, especially teens tend to hide symptoms of what they deem as embarrassing illnesses.  They may have not even told their parents, let alone been to the doctors yet!

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The other problem is that sometimes it takes a long time for doctors to correctly diagnose these illnesses, I speak to so many people with IBD who were initially fobbed off with a diagnoses’ of everything from piles to anxiety.  Perhaps we just need to trust that some students will sometimes need to go to the toilet more often than others in order to not isolate, embarrass and upset those who have a genuine need.

If you have ever soiled yourself in public you will know that this isn’t a joke.  It is mortifying and can make you feel that you should stay home forever, it can make you feel embarrassed, humiliated and inhuman.  It can make you feel life isn’t worth living.

Are these things worth it to stop some minor disruption to classes and social events?

I think not.

 

Sam

National Diversity Awards – I got shortlisted!

I am thrilled to say that I got shortlisted for the 2015 National Diversity Awards as a Positive Role Model in the category of Disability!!  The winners will be announced Friday, September 18th at Liverpool’s Anglican Cathedral at a lovely awards do that I will be attending along with Timm as my cheerleader/chief tissue holder!

I am absolutely blown away to be shortlisted, I felt like a winner just being able to read all the amazing comments from everyone who nominated me.  Shall I tell you a secret? I have them in a file on my computer and on those days when everything feels too tough, when I want to hide away and not speak to anyone, I read them and remember why I do what I do.  Why I write about the most intimate details of my life, why I keep going.  You lot are just the best readers in the world, the responses I get on here, on Facebook, twitter or by email just mean the world to me and I want to take the time to thank every one of you.

“The National Diversity Awards ­ a prestigious black tie event, which celebrates the excellent achievements of grass- root communities that tackle the issues in today’s society, giving them recognition for their dedication and hard work.

The National Diversity Awards will be held at Liverpool’s Anglican Cathedral, September 18th 2015 where there are several award categories including Positive Role Model and Community Organisation Awards, which will be split into five categories including race & religion/faith, age, disability, gender and LGBT. Other awards include the Entrepreneur of Excellence Award, Diverse Company of the Year Award and Lifetime Achiever Award.

Charities, role models and community heroes will be honoured at the ceremony showcasing their outstanding devotion to enhancing equality, diversity and inclusion; thus embracing the excellence of all out citizens irrespective of race, faith, religion, gender, gender identity, sexual orientation, age, disability and culture.”

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Poo is a difficult subject, but it is the thing that I talk about the most and what spurred me to start this blog.  To speak out for the 300,000 people in the UK with Inflammatory Bowel Disease and to Stop Poo Being Taboo.

From there I began to think about all the invisible disabilities that people face and the isolation and anxiety that comes with it.  As  a society we are getting better about talking about disability, but there is an awful lot more to be done, especially for those who have a condition that can’t be easily seen.  And that it why I started the More Than Meets The Eye campaign, to get people talking about invisible disabilities.

I am really proud of all that I have achieved so far, but I would love to make a difference to so many more people.  Of course, I would love to win this award, but I already feel so blessed just to be acknowledged amongst the amazing people who have also been shortlisted.  Winning would be a bonus, right now I am just overwhelmed that this girl from Sheffield has done something to help so many.  Two years ago as I lay in a hospital bed, feeling that life as I knew it was over, I couldn’t have dreamt where I would be headed.

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Thank you so much to every one of you who voted.

You’re all awesome

Sam xxx

 

 

 

"She has a prosthetic leg anyway…" Disability shaming

The Avengers – Age of Ultron press tour has kicked off and some questionable comments from Jeremy Renner and Chris Evans are overshadowing the film itself.  When asked about Scarlett Johannson’s character the Black Widow they called her a “slut”, because this is acceptable right?

These actors discussing what is essentially a children’s movie calling a female character a slut and a trick shows the levels of sexism in our current climate. It has also been discussed that the female characters of many films are not promoted in the merchandise.

Sexism is rife in Hollywood and has been written about a lot but one comment that stood out for me was when discussing how the female character Natasha Romanoff has a romance with someone other than him, Jeremy Renner says;

“She has a prosthetic leg anyway”  The inference being that he wouldn’t want to date a woman with a disability.

*SLOW HAND CLAP FOR RENNER*

They may be joking but this easy sexism and ablism has an impact on how society sees women, especially women with a disability.  His laughter at the idea of having a relationship with someone with a prosthesis is offensive and reinforces old fashioned and ridiculous ideas that people with a disability can’t be a sexual being or be found attractive.

Watch the interview here…

Well screw you Jenner… Living with a disability is fucking hard and having over paid, ignorant men openly mocking it is wrong.  For those reading this with an illness or disability, don’t let it make you sad, allow yourself to get angry and speak out.  More and more I find myself championing campaigns for people with disability and I think we should call out people who use casual ablism, who make disability the butt of their jokes.

My campaign #MoreThanMeetsTheEye is about bringing disability into the public eye, about encouraging kindness and openness, about getting people to open up and talk to reduce stigma and getting society to understand.

I blogged last week about how I had been called out on “sexualising disability”, I argue that I am simply normalising illness, my sexuality is a part of me and my illness doesn’t stop that.  At a talk I did for the Seven Hills WI, a lady came up to me afterwards and said “you had your colon removed not your clitoris”, after doing a big spluttering laugh I totally agreed!

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But society doesn’t seem to want to see people with disabilities as sexual beings.  Perhaps it makes them uncomfortable?  I came across a great bloke on twitter called Andrew Morrison Gurza who runs a campaign called #DeliciouslyDisabled getting people talking about sex and disability.  It’s amazing and I implore you to go follow him on twitter now!

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The more we allow these sorts of comments to slip, the easier it is for society to make people with illnesses and disabilities feel like outsiders, to isolate them and create an environment where it is ok to mock those different to us.

I’d love to hear your thoughts!

 

Sam x

Exposed Magazine's Local Hero

Thank you so much to Sheffield magazine Exposed for featuring me in the April issue as their Local Hero.  I am blown away and so grateful that my work raising awareness and dropping the taboo around IBD as well as my campaign for Invisible Disability Awareness #MoreThanMeetsTheEye has been recognised.

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I work really hard to keep spreading awareness, positivity, information and support and it means so much to be recognised for this.  All I have ever wanted is to make life easier for others and I try to do this by shining a light on my personal journey to lead the way for those behind me.

 

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Thank you Exposed Magazine, it’s an honour!

 

Sam xxx

#MoreThanMeetsTheEye – Cassidy Little

Did anyone manage to catch Comic Relief People’s Strictly?  It was won by a great bloke called Cassidy Little, he was a Royal Marine who was seriously injured by a bomb in Afghanistan and though I am not usually a fan of Strictly, it was a great show and did a lot of good…

Anyway Cassidy lost a leg in Afghanistan and walks with a prosthetic limb, he quite rightly has a blue badge to enable him to park in accessible places.  I was sent this image from his Facebook page that is being shared around the globe as we speak and I just thought it was yet another great example of why campaigns like #MoreThanMeetsTheEye is so important.

He was parking outside the BBC after doing some filming, he had his blue badge on display yet when he came back to his car, he found this note accusing him of parking in a disabled bay when he wasn’t disabled.    “Photograph taken” they declare! Because of course, if you can’t see a disability in the flash of a photograph it can’t be there, right?

 

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I could rant and rave all day about the cowardice and sheer egotistical ignorance of the person who wrote this note, but instead I will hand over to L/CPL Cassidy Little of the Royal Marines himself.

“Dear Sir/Madam,

Yesterday, while doing some filming with the BBC, I parked my vehicle in a designated disabled parking spot in front of the Meadows Park. I parked there because I do, in fact, have a blue badge, which is in date and registered to my name. This blue badge was on display for the ticket warden, other visitors, and indeed the world to see. Both Aspects of the blue badge were displayed, and I was parked between the lines.

The entire scene was 100% legal.

You can imagine my surprise when I returned to my vehicle after the shoot to find the attached note, from an anonymous local, lying on my windscreen. I have searched the note thoroughly for a return address or contact detail, but I am afraid that the coward left no such details. So I ask that I may respond with a very public note to him/her about my feeling on the subject.

If you could ‘Share’ my thoughts to this unknown ‘Parking Anorak’, I would be very much in your debt.

I think it is important to point out that the reason I went to Afghanistan was to support the western word, and its way of life. The entire reason that people are able to take advantage of a government for things like Blue Badges, Education, DLA, Tax benefits, Public services, police, NHS, Fire service… etc… is because people like me go to war to stop the bad people who want to rip that way. So when one of our brave soldiers, like me, returns barely alive, missing a leg, and finds himself in a position where he might need a blue badge, I don’t expect the recipients of these government benefits to act like spoiled little brats. Please remember that your way of life has cost ‘life’ to maintain, and in this case, ‘limb’.

Now, I have spent the last 4 years trying to behave like a fully-able person, because that is what you strive for when you have parts of your body traumatically ripped from you. You want it all to go away and for things to return to normal.

So if you happen to see me in trousers (which I have only recently become comfortable wearing), walking without a limp (which I have spent years trying to perfect) please keep in mind that my leg has not grown back, and the discomfort I live with every single day does not go away.

And if the writer of this letter wants further evidence of this, I will happily send them a picture of me, cleaning the blisters on my stump, for their next birthday.

Thank you for your time,
Sincerely,
L/CPL Cassidy Little
Royal Marines

 

 

Please click on this link to the original post on Facebook and share the heck out of this story.

We salute you Lance Corporal, let us all remember that there is #MoreThanMeetsTheEye

 

Sam xxx

More Than Meets The Eye – Campaign for Invisible Disabilities Awareness

After my post on using accessible toilets with an invisible disability went viral with over 2 million views, I knew I had to harness this amazing audience and do something good with it and so after spending the week talking to people with disabilities all over the world and also Disability Charity Scope, I am over the moon to launch More Than Meets The Eye, a campaign for invisible disability awareness.

In the open letter to the woman who judged me for using accessible toilets, I wrote “I know you saw me running in, with my able bodied legs and all. You saw me opening the door with my two working arms. Without any visible sign of disability.  My lack of wheelchair may have suggested to you that I was some lazy cow who didn’t care. You may have seen my face blushing as I caught your eye and assumed I was showing guilt at blagging the disabled loos. You tutted loudly.”

I’ve received THOUSANDS of messages from readers who have faced similar judgement from members of the public because of their own invisible disability. People with cancer, prosthetic limbs, autism, Tourette’s, brain disorders, bladder issues, partners with dementia and so many other issues… All saying the same thing.

That there is more to them than meets the eye. Their disabilities may not be visible at a glance but they are so real and they make their lives difficult at times.  That not every disability requires a wheelchair and that using an accessible toilet or disabled parking space isn’t a luxury or a privilege, it is a necessity for them to lead their lives.

I have learnt so much from the people who have contacted me, I had a chat with amazing charity Scope and they agree that more needs to be done to raise awareness of invisible disabilities…

And so begins this campaign… #MoreThanMeetsTheEye is my way of making a stand for all the people who contacted me and for the millions around the world who live every day with an illness or disability that affects their lives but is unseen by others.

People with an invisible disability don’t want special treatment, but for society to be more aware that they exist, for everyone to think twice before judging someone who looks seemingly able bodies, and to be more compassionate and kinder to their fellow human.  More Than Meets The Eye is a way to bring the discussion of Invisible Disabilities into the lives of everyone.  To share real stories and explain how it is to live with an illness or disability that can’t easily be seen.

No one expects for the public to know about every single disability and illness but rather than immediately judging someone you see using accessible toilets or disabled parking, stop and remember there is a human being on front of you who may have many different issues that they shouldn’t have to explain to you.

sam cleasby tut disabled toilets more than meets the eye

I am sharing with you some messages I have received from readers of So Bad Ass. Please join me in sharing your own stories using #MoreThanMeetsTheEye or perhaps you can take a photograph naming your invisible disability or how you feel?

I will be doing a bit of blogging and writing for Scope in the coming weeks and really hope to raise their profile as they do a fantastic job at supporting people with disabilities as well as educating, raising awareness and working hard for equality.

This is an issue for millions, so many people are sharing their own stories of being judged, but I genuinely don’t think that all the ones doing the judging are nasty or mean people!  I think they believe they are defending the rights of those who they think are entitled to use accessible toilets or disabled parking spaces.  I have had so many telling me that they have been the person tutting but it is because they see someone seemingly able bodied and think they are helping.

The reality is that there are so many reasons why people need extra support and we all need to be more aware that invisible disabilities exist on so many levels and that judgment just makes lives more difficult.

Please take a look through some of the images below and take the time to read real quotes on how it feels to be judged for something that is beyond your control.   The first one is from an email I received from a mum talking about her little girl.

“She was born at 26 weeks and had to have part of her bowel removed.  We use disabled toilets and the disgusting glares and tuts we get are unreal.  I refuse to explain my daughter’s complex health issues with strangers so they usually waltz off believing they’ve put the world to rights.  In actual fact they’ve just made a disable little girl and her family much more anxious about going out.”

Read that and remember it the next time you see someone seemingly able bodied using an accessible toilet and think you are helping by telling them off…

Take a look through these quotes and I hope they will make a difference to the attitudes of society, I would love to see these printed in and around accessible toilet areas! Together we can make people realise that there is #MoreThanMeetsTheEye

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For every person with an illness or disability that can’t be seen immediately, I want a brighter future, a happier future and a kinder and more compassionate future.

Please share and get involved, I am so overwhelmed at the viral attention and think we have got people talking, but we can go further with #MoreThanMeetsTheEye and actually make a difference worldwide!

You can share your own stories of Invisible Disability using #MoreThanMeetsTheEye on Facebook, twitter and instagram or share them with me through my contact page and I will display them on the More Than Meets The Eye Page here on So Bad Ass and on all my social media.

You can find me on twitter @so_bad_ass, Facebook and Instagram.

Let’s make a change and get people talking.

✌️& ❤️

Sam x

 

You can contact Scope on their website or by phone on 0808 800 3333 or email at