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I’m on the Disability Power 100 List!

I can’t explain how honoured I feel to be recognised on the Shaw Trust Power 100 list 2018. You can read more here http://www.disabilitypower100.com

The Shaw Trust Power List is an annual publication of the 100 most influential disabled people in the UK. Since its inception four years ago, the publication has gone from strength to strength. Over the years it has allowed Shaw Trust to encourage businesses, employers and other organisations to reflect on opportunities available for disabled people. The list plays a vital role in providing much needed encouragement to the young and talented leaders of tomorrow, allowing them to see that aspiration and ambition can be fulfilled regardless of disability or impairment.

I don’t do any of the blogging, speaking or activism for recognition but to help others. I remember how isolating and lonely it was when I was diagnosed and going through surgeries and treatment and all I ever wanted was to help anyone else feeling like this.

During my darkest times, blogging has helped me to find some light, knowing that I could use my experiences to help others got me through and I am so proud to have been able to support so many people over the past five years.

Disability power list 100 2018

Thank you to every person who has taken the time to read my blog, share it or reach out to me, it’s genuinely an honour and a blessing to be a part of your lives.

A very wise woman once told me that every person has a story and if you are privileged to hear those stories then be grateful and humble that you have that opportunity. And that’s how I feel every time I get a message from a reader.

Life can be short, scary and sometimes it sucks but count your blessings and try to use your time to bring goodness and kindness into the lives of the people around you.

Money, fame, accolade, they’re nice but what is important is love, caring and kindness. It’s what holds the world together.

Thank you so much for being part of my journey.

✌🏽& ❤️

Sam xxx

Northern Blog Awards – I won!!

Last weekend Timm and I went to Manchester as I had been nominated and shortlisted for the Disability and Chronic Illness best blog. I was totally honoured and really pleased to be shortlisted for the second year running and though I didn’t expect to win, we went along to hang out with some amazing bloggers and have a night out!

And so it was a total shock to actually win!!! 

Northern blog awards disability chronic illness

It was a wonderful night and the first award I have ever won so it is so hugely appreciated and I was a little overwhelmed.

Northern blog awards

Take a look at a little video of the evening here 

Huge thanks to everyone who voted and to the Northern Blog Awards.

✌🏽&❤️

Sam x

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

Please offer me a seat…

Last summer I was contacted by Transport for London and a TV company about doing some secret filming and trialling their ‘Please offer me a seat’ badges. 

The ‘Please offer me a seat’ badge and card for people who find it difficult to stand when using public transport. The badge and accompanying card were created following requests from customers who struggle to get a seat, as their need is not immediately obvious. The badge and card remove the awkwardness of customers having to explain their need for a seat to others.

I wasn’t that confident that these badges would work, after all London tubes are not the friendliest places on earth and most people don’t even make eye contact let alone look to see if you are wearing a badge!

I have a chronic illness called Ulcerative Colitis, I have a permanent ostomy bag and symptoms of my impairment are extreme fatigue, joint problems as well as the odd bag leak.  From the outside, it is very difficult for anyone to see that I have an impairment yet there are times when I struggle to walk, stand and the anxiety of these things can make it really tough to even leave the house!

And so I boarded the tube with a team hiding at the other end of the carriage filming me and the people around me.  I stood on the busy carriage with my badge attached to my jacket and waited.  I didn’t have to wait long, within a minute a man waved to me and offered me his seat that I gratefully accepted, after a minute or two I spoke to him and the camera crew came in, I asked why he had offered me his seat. He said he noticed the badge and thought at first it was the pregnancy badge, then he saw it simply asked for a seat and he assumed that I must have some need to sit. We thanked him and moved on.

For the next two hours we got on tube after tube after tube and every single time, I was offered a seat almost immediately.  I was genuinely gobsmacked!

One man who was standing but saw my badge nudged a seated person and pointed at my badge and they jumped up offering me their seat apologising they hadn’t spotted the badge before.  They all said that the badge was a good thing and would make them realise that the person wearing it probably had some sort of illness or impairment and needed extra support.

There was not one journey in that time that I wasn’t offered a seat.  Men, women, children, older people, all saw the badge and offered to let me sit in their place.  I was expecting that a few people would take notice but I was amazed that it had a 100% success rate for my trial.

Last autumn, TfL held a six week trial with 1,200 people to test the new badge and card. More than 72 per cent of journeys were found to be easier as a result of the badge, and 98 per cent of people taking part said they would recommend it to somebody who needed it.

As a result, they are now introducing the ‘Please offer me a seat’ initiative permanently. The free badge and card are now available through their website or by calling them on 0343 222 1234.

There are no qualifying criteria – applicants do not need to provide a GP’s note or their medical history. The badge and card can be used across the network, on London Underground, London Overground, Buses, Docklands Light Railway, TfL Rail, Trams and River Services.

I think the badges are a marvellous idea, I would generally be too embarrassed, too uptight and well, too British to actually ask someone to give up their seat for me! I would assume they would question me and I would have to answer personal questions to a stranger if I asked and so these badges give an easy to understand request that isn’t pushy and in my opinion, help to end that awkward feeling of needing help but not wanting to ask.  The fact that I had such a positive experience really made me feel more positive about society and more confident in travelling around London on public transport.

 

“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.

toy like me

#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