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.
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!!!
https://www.sobadass.me/wp-content/uploads/2015/08/img_37901.jpg960960samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2015-08-28 07:14:132015-08-31 08:28:13Music in the Gardens and Crohns and Colitis UK
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!
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.
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.
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 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.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 – remember that even the largest of companies are run by human beings and they are there to help.
https://www.sobadass.me/wp-content/uploads/2015/07/unknown1.jpeg225225samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2015-07-05 07:30:112015-07-05 07:30:11Good Work Tramlines! Thinking about 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.
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!
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!
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.
https://www.sobadass.me/wp-content/uploads/2015/04/avengers-2-age-of-ultron-it-s-going-to-be-bigger-better-and-with-a-lot-more-hawkeye-27a0fae2-4330-484c-9560-6fdb3afc24081.png6251000samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2015-04-23 14:39:142015-04-23 14:39:14"She has a prosthetic leg anyway…" Disability shaming
As my photographs of an old photo shoot with my stoma have gone viral last week, I have been subject to a few comments about sexualising disability (and some just telling me that ostomies are gross and I should put it away, but that is a WHOLE other story!!!) and I wonder am I guilty of that?
The short answer is fuck yeah! And you know why? Because my sexuality, my femininity and the person I am didn’t get removed along with my colon. The long answer is about how disability is seen in our society and also how women are viewed in society.
In 2013 when I had my colectomy and an ileostomy formed, I did what we all do in times of uncertainty and I googled it. What I found were some great charities such as Crohns and Colitis UK and I A Support, but what I wanted was a personal story, something that I could relate to.
Looking at images was even worse, there were either terrifying images of stomas that were infected or prolapsed or photographs of smiling old ladies… Nothing that I saw helped me, it frightened me, upset me and made me feel that life as I knew it was over.
And that is why a month or so after my surgery, I made the decision to have some photographs taken. It helped that I lived with a super talented photographer! I wanted some images that represented ME. The person I was before and the person I wanted to find under my scars, dressings and emotional pain. I knew I was under there somewhere, and the camera helped me find myself again.
When I saw the photos I was so overwhelmed. I saw some great images of me. And then my ostomy. It made me realise that I was still me, that my stoma was such a small part of me and all the other characteristics were still there. It empowered me to speak out more, to share my photos and share my story. And to this day, I tell you now, I am DAMN proud of every one.
People like to say that I did this for Facebook likes, for twitter followers or to boost my blog stats. And I suppose they are right. I share all my images because I want to reach as many people as I can who are feeling lost in their illness, who feel that the world has forgotten who they are and only sees their disability, to the people who want to know that life goes on after ostomy surgery. I want to help as many people as I can and if sharing my images does that then bloody go me!
I would also like to point out that there are HUNDREDS of photos on this site and only a handful are what anyone could consider ‘sexualised’. I wouldn’t say I sexualise my disability, I would say I normalise it. I show photographs from every part of my life, there are photos of me playing with the chickens, hanging out with my kids, with my husband, my mum, in gym gear, at the beach… I show all parts of my life because my illness and my disability do not change all those parts of me.
I know that my audience feel that I help raise the profile of the diseases, that I support many and that I inspire others to speak out and to be brave. I know this because they tell me so and I have to laugh at those who think this is simply an ego trip or a numbers boost!!
I don’t prescribe getting your hoo-hoos out to anyone, I do not suggest that taking your clothes off for a photograph is for everyone, in the same way that body building, dancing or wearing a bikini isn’t for everyone. What I do talk about it self love. I talk about body confidence and in taking positive steps to you living a happy, fulfilled life. The path to this is different for everyone, for me as a photographer and a photographer’s wife it was through imagery. I would have done EXACTLY the same shoots beforehand.
If I choose to show my sexuality alongside my disability and you don’t like this, then I suggest you click away, go look at a different site, or even better go read a book, talk to someone or make someone happy! If my sexuality makes you feel uncomfortable, then please step away. It’s fine, honest!
But don’t slut shame me. Don’t belittle my plight to make a difference in the world by judging me on the images that show my undercrackers. It is so easy to use a woman’s body against them, to suggest that any showing of flesh is in some way a dart in the heart of feminists everywhere, to imagine that my professionalism is affected in any way by an image that shows my stoma.
I am a feminist in that I believe in equality for men and women, it is odd isn’t it that when we see the semi-naked photographs of men that there is no backlash, no one suggesting they are belittling the campaign by showing their bodies, yet when women do it, we are subjected to judgment and mocking.
The facts are that I am a woman. I have a stoma. And I live in a country where I have free speech and the freedom to show images of myself.
The facts are that I make a difference. I help many people and I do it in my own way.
The facts are that I am so bad ass and I will carry on raising awareness, supporting people and kicking ass!
https://www.sobadass.me/wp-content/uploads/2015/04/img_16301.jpg320320samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2015-04-14 17:13:572015-04-14 17:13:57Sexualising disability or normalising life with an illness?
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?
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.
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,
L/CPL Cassidy Little
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.
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
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.
https://www.sobadass.me/wp-content/uploads/2015/03/img_0798-01.jpg960960samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2015-02-27 18:36:322015-02-27 18:36:32More Than Meets The Eye – Campaign for Invisible Disabilities Awareness
The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country. Disability Rights UK believes that everyone who experiences ill-health, injury or disability should have the same freedom and independence as other citizens. An important part of that freedom is having the confidence to go out, knowing that public toilets will be available, accessible and will meet your needs.
You can also purchase the 2013 edition of the National Key Scheme (NKS) Guide which includes the location of the 9,000 NKS toilets fitted with the NKS lock. This guide is the only one of it’s kind and really does open doors to independent living. As well as an app.
This information comes from NKS and you can purchase your own key for over 9000 disabled loos around the UK from them for just £4.00. This can be a life saver if you suffer from Ulcerative Colitis or Crohns during a flare up or if you have a stoma, it enables you to have access to a toilet to empty your bag and have a sink or basin in the cubicle to be able to clean yourself.
Having to live with IBD or with a stoma can be difficult, if there is something that makes your life just a little bit easier, surely it’s worth it. I haven’t had a key in the last ten years as I think I felt I wasn’t ‘disabled enough’ – I felt like perhaps Id be taking something away from others who needed it more. Silly, I know.
Now I have the stoma and ileostomy I think Im going to get myself one of these. Id rather have the key and not need it than need it and not have it!
For more information go and take a look at the Radar site.