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“Oh, I don’t know how you cope!” (sad face)

I get this from time to time, the sad face, head tilted to one side, sometimes there are actually tears in the eyes.  The look of full on pity, perhaps a hint of ‘thank fuck it’s not me’ mixed with horror. 

“Ohhhh, I do t know how you cope!” 

I cope because I have no other choice.  I actually hate the word ‘cope’. It’s nonsense isn’t it?! Coping simply means getting through each day, each hour, each minute.  There’s no opt out in life (well, there is but let’s not go there), you can’t choose to not be ill one day, you can’t pop off your stoma and reattach your arsehole.  So asking me how I cope sometimes feels like you’re asking how I am still alive.  How I’ve chosen to live even with this disability. 

Perhaps I’m being over sensitive, but sometimes I can’t fucking stand the sad looks I get, the pity, the tilted headed frown.  

When I talk on here, in public, on social media, it’s not because I want your sympathy. I just want you to understand a little more. I don’t want to feel like you are appalled by the realities of my illness, I just want you to know what they are. 

I had a big leak recently and someone saw what had happened and the aftermath. They said with utter horror and sadness “ohhhh Sam, it’s just awful!!! I don’t know how you can live with this! How do you cope?! I couldn’t do this!”

I don’t think they meant to be hurtful, I don’t think they realised that their words hurt me far more than the blockage that had caused my bag to block up and push away from my skin.  


Perhaps I’m being unfair in expecting understanding without sympathy, care without pity.  After all it’s hard enough to understand my own feelings let alone expect others to know how I need them to react. 

Just remember for the future though that I really don’t want you to feel sorry for me.  We can talk about it, we can say that it’s shit (with every pun intended!), we can discuss how it’s sometimes really, really fucking hard to have a chronic illness and a disability. 

Take my lead, if I’m crying then please care for me and give me a hug. But if I’m just dealing with my usual day to day life, be aware that your pity can make me feel like I’m a second class citizen, it makes me question your thoughts on me and my life.  Your tilted head sad face may be well meaning but feels patronising as hell. 

✌️ & ❤️ 

Sam XX 

Quentin Letts and his mockery of disability

Quentin Letts wrote in his Daily Mail column this week about a ‘talkshow war’ between Andrew Marr and Robert Peston.  Andrew Marr had a stroke a year ago and Letts decided to name him “Captain Hop-Along” because apparently journalism now consists of reverting to a 10 year old school yard bully.  Mocking disability is NOT OK… how ridiculous that in 2016 we even have to say that.

The whole piece is filled with jibes over the presenters looks, age and ability, I felt as though I was reading something by Katie Hopkins.  Or the mean bully I knew as a child.

“Sunday mornings just became a little madder and more metropolitan… we have Andrew ‘Captain Hop-Along’ Marr growling away on BBC1, throwing his arm about like a tipsy conductor.”

Speaking of his stroke to the BBC, Marr said “had affected “the whole left hand side of my body, which is why I’m still not able to walk fluently.  I do a kind of elegant hobble is the best I can manage – my left arm isn’t much good yet and I’ve got a lot of physio still to do”

Why do we still allow the discrimination of disability in mainstream media?  I know a few people who have had strokes whose lives have been turned upside down, they have a tough recovery and have to fight to regain their lives, which many do.

Marr (whether you like him or not) is an inspiration to the 110,000 people who have a stroke per year in the UK.  Returning to work and carrying on his on-screen performances was an important step for those with a disability who want to lead normal lives.  Whether we like it or not, disability is a stigma and Marr is doing a great service to many.

sam cleasby sheffield blogger disability

The Stroke Association says “All strokes are different. For some people the effects may be relatively minor and may not last long. Others may be left with more serious problems that make them dependent on other people.

Unfortunately not everyone survives – around one in eight people die within 30 days of having a stroke. That’s why it’s so important to be able to recognise the symptoms and get medical help as quickly as possible.  The quicker you receive treatment, the better your chances for a good recovery.”

It’s not funny and it’s not ok.  Mocking his speech and movement is a sign of ignorance, stupidity and generally of being an arsehole.  Quentin Letts should be ashamed of himself, even children understand that laughing at a person’s disability is morally wrong.  We can throw words around like free speech, and I stand for that notion wholeheartedly, but just because you CAN say something mean doesn’t mean you SHOULD.

I think Letts should apologise, not only to Andrew Marr, but to the community of people who have had a stroke, who do not need to be called names and mocked but celebrated and supported.

 

Sam xx

#ToyLikeMe

There are 150 million disabled children in the world, yet so few toys that represent them.

One campaigner thought this was wrong and decided to make a stand against the biggest global toy manufacturers and won.

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#ToyLikeMe is the brainchild of Rebecca Atkinson, a journalist from London who started the campaign towards ending ‘cultural marginalisation’ and urged Lego and other toy manufacturers to better represent diverse backgrounds.

In April 2015, Rebecca, who is partially deaf and partially sighted, noticed the lack of representation in the toy industry.

She called on some fellow mothers and together they launched #ToyLikeMe to call on the global toy industry to start representing disabled children around the world.

They started a change.org petition calling on Lego to include disabled mini- figures and received over 20k signatures.

A similar one aimed at Playmobil received over 50k supporters and they responded by becoming the first global brand to back #ToyLikeMe and are working to produce a line of characters that positively represent disability for release in 2016/17.

The crowd funding page raised over £16,000 in a month and will be used to create a website that will be a resource for parents and carers to give them a one stop shop where they can find everything from cottage industries making bespoke plush teddies with hearing aids to listings of global toy brands with representative products.

#toylikeme

After 9 months of lobbying, toy giants Lego unveiled their first wheelchair using mini-figure at Nurumberg Toy Fair last month.

The figure of a young man using a wheelchair and accompanied by an assistance dog is part of a new Fun in the Park set from Lego.

Rebecca says the move by Lego “will speak volumes to children, disabled or otherwise, the world over”.

“As someone who had grown up wearing hearing aids, I remembered firsthand how it felt to be a child who never saw themselves represented by the mainstream and what that can do to a child with a disability’s self esteem. I wanted to change this for generations to come and start to get global brands like Lego, Mattel and Playmobil to include representations of disability in their products.”

“If they present a little boy in a wheelchair in a fun park setting – like they have done with this new product – they are speaking a much bigger message than just a little figure.”

“It is a hugely powerful thing for children to see. I hope Lego have realised the wonderful thing they have done. I congratulate them and I hope this is a start of a lot of incidental representation of their product because the response online has been phenomenal.”

For more information, check out ToyLikeMe’s Facebook page and crowd-funding site. 

Scope’s #EndTheAwkward Romance Classics

It’s almost Valentine’s Day and the fabulous Scope are all about the romance.  As part of their End The Awkward campaign, they’ve kicked off the most romantic time of the year by releasing swoonsome recreations of iconic Mills & Boon book covers – starring disabled people.

They created Scope Romance Classics in response to their new polling that shows just 6% of people in the UK have been on a date with a disabled person they met through an online dating site or app like Tinder. This is because too often people don’t see disabled people in romantic situations. So they made them the romantic leads for Valentine’s Day.

I love it! I love the whole End The Awkward campaign that aims to normalise disability by showing people with disabilities in everyday situations in the media.  On Valentine’s Day, it is a great time to think about everyone in society, not just able bodied.  How often do you see people with disability in romantic situations in the media?
mills and boon scope

 

 

I was really proud to be part of Scope’s A-Z of Sex and Disability last year which aimed to share the experiences of people, educate and support those struggling with their own sexuality due to illness, accident or disability.

mills and boon scope

 

For more information on Scope and End The Awkward, head over to their website now.

 

Wheelchairs are not a fashion accessory Kylie Jenner…

Kylie Jenner, you dick, a wheelchair is not a fashion accessory or a way to show how quirky you are.  Shot by Steven Klein for Interview Magazine, the star of Keeping Up With The Kardashians is on the cover sitting in a wheelchair.

As if this is OK? Disability isn’t something to play at, it isn’t a prop or a way to show ‘another side of you’.  It is a reality that affects millions of people, not a joke or a fashion shoot.

Beth Grossman, Head of Policy at disability charity Scope, told The Independent: “If Interview Magazine wanted a glamorous, sexy wheelchair user on its front cover it’s a shame they couldn’t use someone disabled.”

“Having a non-disabled person in a wheelchair, as a provocative fashion prop, will offend many disabled people. It’s rare that we see aspirational and authentic reflections of disabled people in advertising and the media.

“If we’re going to challenge assumptions about disability, particularly about sex and disability, we need to share real-life depictions and experiences.”

There is a HUGE lack of people with disability in the media when you think that around 15 per cent of the world’s population, or estimated 1 billion people, live with disabilities. They are the world’s largest minority. (According to the UN).

15% of the population… So where are the 15% of TV presenters, models, politicians, movie stars with a disability? Yes, things are improving but it is still a problem that we don’t see a proper representation in our media and this needs to change.

What doesnt help is people with such celebrity status playing at having a disability.  It is offensive, it is wrong, it is not OK.  What bothers me is that this image will have gone through so many people’s hands before making it onto the cover and they either didn’t think it could offend, weren’t bothered, or hoped it would be controversial and increase sales. Interview has since told E! that their intention was to “create a powerful set of pictures” and “certainly not to offend anyone.”

I know this won’t offend everyone, there will be those who say it doesn’t upset them in the slightest and that it is “PC gorrrnnnn mad” but I know I am not alone in being pretty appalled that this happened.

kylie jenner wheelchair

kylie jenner wheelchair

Ablism is rife and I think it important to stand up against the use of disability as a prop for able bodied people to promote themselves as something different.

 

Sam x

 

 

 

Medical ID app

I found out about this app on the iPhone recently and thought it would be of interest to you all. 

It’s called Medical ID and allows access to some vital information on your phone in an emergency situation. It’s free, simple and easy to set up and so I thought I’d talk you through the set up process. 

Go to the Health app on your iPhone.   

medical id app apps to help with disability Go to Medical ID in the bottom right hand corner.   

medical id app apps to help with disability 
Click on that and fill in your information starting with name and date of birth and medical conditions as well as medical notes.  As I have a jpouch, I added in a note explaining that rectal exams must be taken with extreme care. 

 medical id app 
You can then add your emergency contacts (you can add more than one), blood type and if you are a donor. 

 medical id app

Then save the information and it can be found if necessary on your locked screen by pressing emergency and then Medical ID. 

  medical id app  

 medical id app apps to help with disability 
 
It takes a couple of minutes but allows you a little piece of mind that in an emergency, your medical needs are right there for the people who may need them. 

Hope this helps! 
Sam x 

  

Music in the Gardens and Crohns and Colitis UK

On Saturday 4th July I went along to Music in the Gardens, a music event in Sheffield by The Rotary Club.  I went not only to listen to the wonderful Proclaimers but also as a representative of Crohns and Colitis UK – South Yorkshire to shake buckets and sell programmes in order to raise money for my favourite charity!

It was a fantastic event that is now in it’s 10th year, each year the club choose charities to support and we were over the moon to be chosen this year.  Set in the gorgeous Botanical Gardens in Sheffield, the event was sold out and filled with music lovers who filled the space with blankets and picnics for an evening of music and charity.

crohns and colitis charity sheffield

 

I took along my husband Timm and eldest son Charlie to help out on the night, along with CCUK members Cherylyn, Ryan, Ruth and her partner and we had a brilliant time, all the event goers were really generous and lots stopped us to talk about either their own dealings with IBD or those of a family member or friend.  It was great to get to chat face to face with so many and I even got recognised as “that bad ass girl” – Fame!!!

 

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We raised £769.06 for Crohns and Colitis UK and couldn’t be prouder!

Sam x

Good Work Tramlines! Thinking about disability

I love Tramlines.  It is the highlight of the year in Sheffield and is an amazing showcase of the wonderful talent we have in this great city.  For those who don’t know, Tramlines is an inner city festival in Sheffield from the 24th to 26th July, it is city wide with a huge main stage and then venues all over town, all for a stonkingly good price of £30 for a weekend ticket!

tramlines timm cleasby

Photo: Timm Cleasby – The Picture Foundry

So I was chatting to the brilliant festival director Sarah Nulty who told me about how Tramlines is trying to be accessible to all and as I love talking poo, obviously that was my first question.  All toilets are relatively spacious and plentiful for able bodied people, but there are accessible toilets for those with specific needs which will be near the disabled viewing platforms.  But if anyone has access needs for the larger toilets due to a medical issue, Tramlines is offering a special wristband that will avoid any embarrassing questioning for those with invisible disabilities who may need to use the accessible loos at the main stages.

reverend and the makers mark tierney tramlines

Photo: Mark Tierney

If you have a medical issue that may require you to use these toilets, you need to head over to the main wristband exchange points on Ponderosa Park or City Hall with some form of proof that you have extra needs and a valid ticket and the staff there will give you a wristband that allows access to these toilets.  Security and staff will be aware what these wristbands allow and this means there is no embarrassing explanation of your needs during the weekend.

Good work Tramlines!

Regarding disabled access, an accessible viewing platform will be available at the Main Stage, and stewards will be available on the day to help direct you. As with the whole festival, shows on the Main Stage do get extremely busy, so please do arrive early.  The disabled loo access band is for use at the Accessible Toilets only at the main stage and Devonshire Green, not the other venues.

Most venues involved in Tramlines have disabled access. Please see individual venue profile pages for full details of disabled access.  Disabled customers with a carer will be able to claim free entrance to the event for one carer. Email ku.gr1495536731o.sen1495536731ilmar1495536731t@ofn1495536731i1495536731 by 10th July to notify them in advance if you plan to attend with a carer by 10th July. No applications will be accepted after this point.
tramlines sheffield disability accessible toilets
The official charity for this year’s festival will be Sheffield Royal Society for the Blind (SRSB). As well as fundraising across the Tramlines site, they are also producing audio guides to the festival for blind and partially-sighted festival-goers.It is great to know that Tramlines are thinking about the needs of all festival goers and trying to ensure that the weekend will be enjoyable for all.  Having an illness or disability can often feel isolating and going to something like a festival seems as difficult as climbing a mountain but more and more events aren’t just fulfilling the legal responsibilities for disabled people but going above and beyond to make sure they are accessible to all.If you have specific questions and issues then do get in touch with the festival by email on ku.gr1495536731o.sen1495536731ilmar1495536731t@ofn1495536731i1495536731 – remember that even the largest of companies are run by human beings and they are there to help.

I would highly recommend giving Tramlines a visit, tickets are still available but get buying quickly as it could easily sell out!

 

See you there!

 

Sam x

 

This is not a sponsored post, I just LOVE Tramlines! My husband is involved in the running of Tramlines but I have received no remuneration for this post.

National Diversity Awards

I feel very privileged to have been nominated for an award at the National Diversity Awards for Role Model for disability.

I am totally overwhelmed and honoured that people have taken the time to vote for me.

Though I do this blog and raise awareness because I want to make a difference and help others, to be recognised for my efforts is really heartwarming.

Voting closes on June 21st and so please take the time to have a look through the nominees and vote for someone! Of course it would be lovely if that were for me, but having seen the other nominees I’m just happy to be put in the same categories as these wonderful folk.

Please do pop over and vote. It takes a couple of minutes.

Thank you!

Sam x

"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!

sam cleasby sexualising disability

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!

#deliciouslydisabled

 

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