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Guest post: #MoreThanMeetsTheEye - Invisible Disability Awareness
My name is Sam Cleasby and I have no colon. That’s an odd way to introduce myself, but the fact is that my illness and disability is pretty much invisible and that is why I am writing today to campaign for invisible disability awareness.
I run a blog called So Bad Ass about life with Inflammatory Bowel Disease and how it feels to live with this illness, surgeries, medications and recovery. It’s a pretty popular blog discussing a fairly embarrassing disease. But in February this year, the blog went viral when I wrote an open letter to the woman who tutted at me for using accessible toilets.
In this raw, passionate letter, I let out my hurt and anger of being judged by strangers. Over the past few years I have, on occasion, needed to use the accessible toilets. When I had an ostomy that needed emptying or changing, the larger cubicle along with access to water was a necessity to being able to go out and about.
Now I have a jpouch, which is an internal pouch made of my small intestine; this means that I am learning how to go to the toilet all over again. The large intestine draws liquid out of your stool and neutralizes the acid too, which means that sometimes I have accidents that actually burn my skin and so the ability to use accessible toilets means that I can clean myself up in privacy.
Neither of these things are visible though, and so I have faced judgment from strangers so many times. The tuts, the stares, the rude comments, all from people who probably think they are doing the right thing and defending the rights of the ‘genuinely disabled’.
My letter struck a chord and went viral, it was viewed millions of times all over the world and the response I got was phenomenal. People could see themselves in the story, either as the person with an invisible disability who has dealt with this sort of judgment or as the ‘tutter’. I got a lot of apologies from people who admitted they had judged others, thinking that they were taking advantage of facilities without ever thinking that they might be making someone’s life more difficult.
People started sending me their own stories; I’ve received thousands of messages from readers who have faced similar judgment 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, so many illnesses and conditions, some of which I had never heard of!
But they were 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 it makes 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 felt that I had a responsibility to do something with this new-found media interest and these heartbreaking stories of people struggling every day. And so #MoreThanMeetsTheEye was born, a campaign for invisible disability awareness, encouraging people to share their own tales of life with an illness or disability that isn’t easily seen.
This message really struck a chord with me and I wanted to share these words from the mum of a four-year-old 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.”
Messages like this can make a difference and I believe that with education, awareness and kindness we can use our experiences to change the perception of disability.
#MoreThanMeetsTheEye is a way for people to share their life experiences on social media, and to read about other people. Disability can be very isolating and so I hope that as well as teaching society, that this campaign can bring together people with all forms of disability, both visible and invisible to stand strong together and show the world that we all deserve kindness, respect and empathy.
Have you got any experiences that you would like to share either positive or negative? Would you like to be involved in my campaign? What do you think we can do to increase awareness?