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On BBC Breakfast talking about Blue Badges

So there has been an announcement that Blue Badge rules are going to be looked at to make it easier for people with an invisible disability to get them.

I think this is great news, and Scope have said it is “A victory for common sense.”

sam cleasby at bbc breakfast blue badges invisible disability

I was invited onto the BBC Breakfast couch on Sunday 21st January to talk about my experiences of the blue badge and why I think it is a good idea.  It was an honour to go on BBC Breakfast again, I was there a couple of years ago talking about accessible toilets and so it was great to be back!

make up room bbc breakfast backstage at bbc breakfast sam cleasby blogger bbc media city

Timm came with me and filmed some of the day and put together a great video, apologies for the quality of the interview itself as we had to use one recorded by a family member off her TV!

Take a look here

 

If you want to have your say then please take part in the Blue Badge consultation, you need to do this before the 18th March.

For more support on this matter, you can head over to the Scope Community and chat with other members about how this will affect you.

You can chat with me about this on my facebook page or on twitter.

 

Sam xx

Crohns and Colitis UK South Yorkshire

I am really proud to be a volunteer for the South Yorkshire group of Crohns and Colitis UK.

We are a small team who all have either Crohns or ulcerative colitis and we raise awareness, raise money and offer support to local people with IBD in our area.

A few weeks ago we had a race night in Hillsborough to raise money and have a great time. We were over the moon to raise over £1000!!

Crohns and Colitis uk South Yorkshire

We were thrilled to get into the Sheffield Star too.

We put on coffee mornings, attend events and put on our own and everyone is welcome.

Our next event is this Saturday at the medical education centre at Northern General hospital in Sheffield from 1-4pm. I will be doing a talk about the emotional and mental health aspects of IBD and there will also be talks by my wonderful surgeon Mr Brown and an IBD nurse.

Everyone is welcome, please do share the event and come along if you can.

 

Sam xx

Connect Magazine – IBD, a partner’s perspective

If you’re a Crohns and Colitis UK member and get the Connect magazine then you may recognise the folk on the cover!

Crohns and Colitis uk connect magazine Sam Cleasby

 

Thanks to the guys at Crohns and Colitis UK for featuring us and for such a lovely feature.

Crohns and Colitis uk connect magazine Sam Cleasby

 

Sam xx

The Ostomistic Life

Earlier this year, I was asked to feature in the quarterly online magazine The Ostomistic Life and I totally forgot to share it with you guys!

Take a look here, I am on pages 12-15.

the ostomistic life sam cleasby ostomy blogger IBD health invisible illness chronic illness magazine

Loose Women!

A few weeks ago, Loose Women (the ITV daytime show) ran a campaign called #MyBodyMyStory after they all posed for an image in their underwear.  It was all about women celebrating their bodies, however we look and so of course, I decided to send in my photo and then hooted with laughter and giddiness when they went and showed it.

Yey #mybodymystory @loosewomen #ostomy #sobadass

A post shared by So Bad Ass Sam Cleasby (@instastoma) on

 

Yey!!!!! #mybodymystory @loosewomen #ostomy #sobadass #ibd #proud

A post shared by So Bad Ass Sam Cleasby (@instastoma) on

 

Any excuse to flash my bag, eh?!

 

Love Sam xxx

Breastfeeding a two year old – is it controversial?

Ahhhhh other people telling women what they should and shouldn’t do with their bodies again. And heaven help us if a mother does what feels right for her and her child. 

Tamara Ecclestone has been defending herself after images of her breastfeeding her two year old child were shared.


Via Tamara Ecclestone Instagram 

The breastfeeding debate is ridiculous, it shouldn’t be a debate at all! Breast milk is the perfect food for babies and infants, it adapts to your child’s needs and it is awesome. 

Some people can’t or don’t want to breastfeed. They give their children formula milk which is the very next best thing. 

Some women feed for a few days, weeks or months, other for years. It’s really no one else’s business. Parents are just doing their best for their kids. 

This photo is beautiful and reminds me of religious art through the ages, the comments are disgusting and ignorant. 

The worst people for this are other women and I truly believe their defensiveness comes from fear. The scariest thing for a parent is to feel others are judging you and think you’re a bad mum. Mums face constant judgement on every aspect of parenting and it’s easy to feel you have to defend your way by attacking others. 

When I couldn’t breastfeed my daughter, seeing adverts telling me breast is best made me feel like they thought I didn’t want the best for my child. I felt the mums breastfeeding were eyeing my bottle of formula and thinking how shit a person I was. It made me so defensive. 

The reality was that those mums didn’t give a shit how I fed my daughter, they just were thinking of their own kids! 

When I breastfed my son for 10 months I felt judged for feeding him publicly, it was ok when he was a newborn but when he was a strapping kid turning his head, laughing and babbling to me, people liked it less. I was asked to feed him in the toilet, sent to bedrooms at parties, tutted at, laughed at and told that once they had teeth you should stop. 

We all need to be a lot kinder to each other, mums have gone through so much. 40 weeks of pregnancy where your body is changed beyond all recognition, birth (i.e. The act of removing a baby human from your body!!!) and then being responsible for another human being, often feeling that you lose your identity along the way. It’s hard work, man!!! 

So it’s easy to see how we get defensive when we feel attacked. We have created the worlds best child (yeah, we all think ours are the best!!!), we are exhausted, stressed, in love, overwhelmed and the most happy and tired we’ve ever been. So when we feel others think we’re doing it wrong, it hurts. And the easiest thing to do is to attack the opposite opinion. 

But it just becomes a vicious circle. From breastfeeding to weaning, stay at home mum to working mum, helicopter to free range… were pitting ourselves against the wrong people here! Mums need to join forces, whatever our parenting style, however we feed, play or work. We’re a vastly untapped powerhouse of humans! 

Being a mum is hard work and we need to look after each other more. We need to celebrate mothers more. We need to stop being arseholes to mums just trying to do their best. 

Sam xx 

Sheffield Live TV

I was thrilled to be back on Sheffield Live TV last week with Simon Thake just before World IBD Day…

 

Talking Sheffield 17.05.2016 part 1 from Sheffield Live on Vimeo.

 

 

Sam xx

#SeeMySelfie

#SeeMySelfie is a month long social experiment/photography project in which participants explore self representation, acceptance, audience and identity through the medium of self portrait. The project is a collaboration between Girl Gang Manchester and Girl Gang Sheffield, running nationally for the month of May, going on to be an exhibition and photography book later in the year.

I love the concept of Girl Gang and have done some work for the Sheffield group before by writing some poetry for their Tarot Cards.  (I have the most random and weird job and I love it!) So the guys from Manchester got in touch with me to talk to me about their latest project #SeeMySelfie and to ask if I would be involved.  I loved the concept and thought hells yeah!

“Are selfies a powerful space in which women can reclaim and celebrate their own image? Or symptomatic of the narcissism of 21st century culture? Do they allow women to publicly exude self confidence and explore their identity creatively? Or do they reinforcing the idea that a woman’s image is her most powerful asset?”

The month long social experiment exploring self portraiture, self representation and self-acceptance asks members of the public to join the group by taking a selfie every day of May using their prompts as a stimulus, from ‘Eyes closed’ to ‘worst angle’, you are encouraged to get creative and share your take.

Though we are half way through May, you can still get involved, it’s not too late.  Simply sign up for the daily emails at girlgangmanchester@gmail.com and you will receive a email every morning with the title of that day’s selfie as well as a photograph or link to a relevant article.

If you want to share your pictures either every day or occasionally, you are asked to upload them using the hashtags #SeeMySelfie and tag either @girlgangmcr @girlgangsheffield, include your thoughts/feeling about the picture or the process of taking it in the caption of the photograph. This can either be a few words, a whole essay or even a poem/song, whatever you fancy.

The project has been an interesting one so far, I thought it would be simple and a bit of fun but the daily provocations have actually been quite challenging and it has pushed me emotionally and mentally.  The idea of a selfie is a pretty self obsessed and egotistical thing, we share images of ourselves more now than ever before.  But this project shows that selfies can have a purpose, they can make you think, they can be social and they can do good.

The challenges so far have been:

Day 1 – Introduce Yourself

I’m Sam, 34, ever changing body, ostomy bag, writer, speaker, so bad ass… My surgeries have made me feel proud to be still standing, they remind me that I have one body and it is a miracle. My selfies show the world that I have no shame. I’m in my 30s, half Indian, northern, covered in scars, plus size and have an ostomy bag. I’m as far from the media ideal as you can get, but fuck that. I love my self(ies).

see my selfie #seemyselfie girl gang manchester sheffield

Day 2 – Selfie with your eyes closed

Today we got our new chickens – it’s been a year since we had some and so it’s super exciting. I grew up as a city girl, but I’ve grown into a country woman. This beady eye is looking out for me.

see my selfie #seemyselfie girl gang manchester sheffield

Day 3 – Try something new

I thought I’d try a selfie of shadows and silhouettes…

see my selfie #seemyselfie girl gang manchester sheffield

Day 4 – Look how you feel

I feel gobby. I speak out about things that people feel uncomfortable about. I was always told I was a loud mouth, I just decided to put it to good use.

see my selfie #seemyselfie girl gang manchester sheffield

Day 5 – A selfie just after the shower

For 6 weeks, my sister and her family from Australia has been staying with us. There’s 8 of us in the house meaning not enough hot water to go round… She goes home today and I’m devastated. I’d have all the cold water every day to get to hang out with my big sis. Today is going to be a tough one

see my selfie #seemyselfie girl gang manchester sheffield

Day 6 – Take a selfie from your best angle

Ok, best as in most attractive? Then this probably isn’t it. But I took this photo at 7 this morning on a walk with my dogs and the husband. I love that it shows my terribly uncoordinated dress sense. But mainly I love that for the first time in ages I felt well enough to be up and out walking at 7am. Xx

see my selfie #seemyselfie girl gang manchester sheffield

Day 7 – A selfie from your worst angle

I really dislike my many chins! I always try and pose in a way that hides them. I also hate photos of me looking sad, I tend to be all toothy grins or silly faces. I’m surprised at just how uncomfortable I am at sharing this photo.

see my selfie #seemyselfie girl gang manchester sheffield

Day 8 – A selfie in a place you wouldn’t normally take one

After such a grim start to the year, I wouldn’t have believed I’d be in a bikini, eating ice lollies and sunbathing in the garden of our own home in May… But here I am!

see my selfie #seemyselfie girl gang manchester sheffield

Day 9 – Your most commonly used selfie pose/expression

I feel happy, confident and at ease in this photo.

see my selfie #seemyselfie girl gang manchester sheffield

Day 10 – The first selfie you take

I’m a bit hungover today, spent the morning working, this afternoon is house cleaning.  I don’t wear makeup or fancy clothes when I am in the house, and as I work from home I can most often be found in comfortable clothes without my hair or makeup done.  I love wearing nice clothes and getting glammed up but I just don’t feel the need to do it every day.

see my selfie #seemyselfie girl gang manchester sheffield

Day 11 – A selfie which shows your whole body

I don’t feel like taking a selfie today, I’m sick. I have a lingering chest and throat infection because my immune system is so fucked that I can’t shake bugs off. I also have a blockage in my stomach. I don’t have a large intestine so sometime food gets stuck in my small intestine and can’t come through my stoma – I’m tired and feeling sorry for myself. So you get a photo of my whole body, but not my face.

see my selfie #seemyselfie girl gang manchester sheffield

Day 12 – Take a selfie highlighting your best feature

I have a heart birth mark on the sole of my foot, and I was thinking it represents my best feature, my heart. I think and hope that I am kind, caring and full of love. I hope that when I’m no longer on this planet, that those who know me would say I was kind.

Kindness is totally underrated yet always necessary ❤️

see my selfie #seemyselfie girl gang manchester sheffield

You can follow the rest of my month of #SeeMySelfie on my instagram page, do search the hashtag though and see all the other people taking part.  I feel like I have ‘met’ some really interesting people in the past couple of weeks, just through viewing their selfies and I can’t wait to see what is still to come!

Get involved with #SeeMySelfie by emailing girlgangmanchester@gmail.com and to see what else Girl Gang are up to, head over to their website now.

 

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

This Morning with Philip and Holly… And So Bad Ass

Yesterday was a whirlwind of awesome! I appeared on ITV’s morning show This Morning and got to meet the very wonderful Philip Schofield and Holly Willoughby and talk about my all time favourite subject, poo!

I was invited on by TV and radio personality Judi Spiers, who along with her husband, invented a product to help people to change ostomy bags.  I reviewed the Riksack for them last month and they had been invited onto the couch for National Bowel Month and asked me to go with them.  Hooray!!

The researchers got in touch and had seen my blog and thought I would be great on TV, which was a huge compliment, almost as exciting as when they told me that Philip had been reading my blog and loved it! Arghhh!!!! So, if you are reading this now Mr Schofield, hiiiiiiii you are a living legend and a total fox!

I got the train down to London the night before after a traumatic decision over what to wear on the telly box.  I asked my awesome followers on Facebook for advice and advise they did… Over 300 of them, though unfortunately all saying different things!! In the end I went for a flowery dress by Lindy Bop which I felt comfortable in and also felt fab in.  Of course, I also wore my sparkly, gold boots.

I got picked up in a car from my hotel and taken to the studios, hilariously there were some paparazzi hanging out and they got excited as I pulled up.  Unfortunately they were super disappointed when I got out of the car, I still waved and smiled just in case! (HA!)

The staff at This Morning were all lovely, very welcoming and trying to put you at ease, there were drinks and pastries and snacks but I didn’t eat as I didn’t want my stoma farting and bag filling up on live TV.  I went into hair and makeup where I was attended to by #MrFaceMaker and then back to the Green Room I went.

I filmed a pre recorded piece where I changed my ostomy bag using the Riksack, I was hoping to be the first stoma on live TV but alas, they cut that part out of the live show.  It was a bit odd to change my bag in front of strangers, the team were very sensitive though and made sure it was just a producer and a cameraman.  After changing my bag, I asked the producer what she thought, she admitted that she had been concerned as she was squeamish and was worried that it was going to be difficult to watch, but she was amazed that my stoma was so small and not nearly as terrifying as she had imagined.

This is why I do all the things I do, to change perceptions and break those taboos.

So we then went onto set (which is much smaller than you imagine and all in one room) and I met the King and Queen of daytime TV, Philip and Holly.  Philip came over and kissed me and welcomed me to the show and I went over to Holly… and curtsied.

WTF? Whyyyyyy would I do a curtsy?? I was just a bit star struck and then I laughed and said “Oh.  I just curtsied” THEN CURTSIED AGAIN!!!

This is why I shouldn’t be allowed out in public.

Anyway, they had a laugh at my weirdness and then we sat on the sofa, I was with Judi and surgeon Mr Ian Daniels and off we went…

The interview went quicker than you think it will, it seemed to be over in a flash and then we were done! I wish I had said more but the slot was about the Riksack product and about signs and symptoms of bowel disease and bowel cancer and so it was important to get that info out.

I loved every minute of it and would love to do more TV as though it is terrifying before, it is so enjoyable once you are there doing it.  It is hard to get a lot of info into a 7 minute slot, especially when there are three people being interviewed it is nigh on impossible to say everything you want.  So apologies for not getting a bit more So Bad Assness out there!

Holly is as beautiful in real life as she is on TV.  Seriously, I was a bit in awe of her and she was really sweet and lovely.  She was very friendly and complimented my dress and they both congratulated me on this blog and my work in disability.  Philip is a total fox.  I loved him in the early 90s with Gordon the Gopher and can’t believe I got to meet such a famous celeb.  He was really friendly and put you right at ease.  People have asked me to dish some dirt on the two of them, but I cant! They were just lovely!

I am really proud of myself.  The past few years have been hellish and there were times when I was in HDU or crying in pain in bed or leaking and feeling like a monster when I felt so low that I couldn’t imagine going on.  So to be on live TV four months after my last surgery was a HUGE milestone.

I do what I do to make others understand what life with an illness or disability is like, I do it to break taboos, to educate, inform, support and inspire.  I do it to make a difference.  I do it because I need a reason that I have had to go through all this.

I didn’t plan for my life to be a series of battles, of medication, surgery, illness, pain and suffering.  But this is the hand I was dealt and so I will use every single one of these things to help others and make a difference in the world.

You can view the interview below, thanks for all the lovely messages on Facebook and Twitter, they mean everything.

Sam xx