Guest post: #MoreThanMeetsTheEye - Invisible Disability Awareness
SoBadAssSam
Posts: 7Member Listener
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.
I hope that people will get involved on Facebook, Twitter and Instagram and that #MoreThanMeetsTheEye can become a message of hope and change.
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?
Thanks
Sam
Replies
I heard they were already going to change the sign. It was still going to have the wheelchair sign, but the sign depicting the wheelchair is to be made smaller. I'm not sure where they are with that though, sorry.
One thing I thought of perhaps is to add more of the disabled toilets so that more than one person can use them. Perhaps also to add a larger toilet in the main area, that anyone can use as a sort of 'honesty' usage, so that if someone feels uncomfortable going into a separate area, they can use that one instead.
Its a difficult situation, I know how it feels to have an invisible illness, I was diagnosed with ME in 1997. However I'm now a wheelchair user because of knee problems and CRPS and so I see it from both sides.
I don't think the problem is 100% ignorance, I think like many other problems faced by people with a disability, its caused by people who aren't disabled using disabled spaces, disabled toilets, claiming benefits etc and so people then naturally assume it is someone like that.
Many times I have been sat waiting to use a disabled loo and the person walks out and sees me and apologises "there was a queue", "I was desperate" and many more but the funny thing is that I haven't said anything or given them a look because they might have an invisible disability.
What is a shame is that it sometimes feels like these problems are causing a rift between wheelchair users and people with an invisible disability, that's upsetting because we should all work together to tackle these problems.
As for the signs for toilet doors and parking, I'm not sure how you would design a sign to show disability without using the wheelchair symbol? It's difficult.
Even though I use a wheelchair, I have had elderly people verbally abuse me for parking in a disabled bay, usually they apologise when they see the wheelchair but on one occasion an old man kept on even when I was sat in the wheelchair. I'm afraid I did lose my temper on that one occasion after spending a long time explaining.
There will always be a problem of some sort
A sign should be instantly recognisable, you shouldn't have to try and figure out what it means, so what could we use to cover general disabilities?
I don't think it's possible!
You drive along looking to park and you spot the logo so easily, it works and so is the problem the logo or people feelings and the way they feel?
No one likes to feel left out, like they don't matter but unfortunately someone will always feel left out. For 13 years I had an invisible disability but the logo didn't worry me.
The logo has worked for many years, it can work for many more, it will never please everyone, its a white person in that logo! It doesnt show an amputation! It's not an electric chair! And so on, its just meant to instantly show what that space or toilet or whatever is for, just that, it's not meant to offend or leave people out.
Last weekend I finally was able to go for a family meal with my in laws, I haven't been well enough for 4 years to do that. As we left the restaurant, I was tired but so happy that I'd managed it. Then I got jokes made about me for parking in the disabled space...but my own in laws!
I don't just have an invisible illness, I have an illness that some Doctors don't even believe exist, and as such; family and friends act like there is nothing wrong with me. I can't work and spend my days isolated either in bed or trying to manage to get to the sofa. I cry at night because I have insomnia and I'm in chronic pain. Family members don't invite me to events because my wheelchair, used for longer walks, embarrasses them.
Unfortunately this also happens with a visable disability aswell, I just think that people can be harsh and judge no matter what.
I'm sorry you've had to have this happen, what people don't realise is that this upset then causes us more pain as well.
I hope you can find a way to get through this, as for docs not believing you, find a doctor that does, there are some good doctors who understand ME and our local hospital even has a dedicated team for people with ME.
As for family members, yes it is extremely hurtful. Instead of celebrating the victory with you, that you managed to walk a couple of meters without a stick, they point and laugh. Someone must have forgotten to tell me that when you try hard at school, get a job and take on more optional education and pay your own way, then become unfortunately disabled that people would ridicule you instead of asking if you need any help.
I'm really glad that invisible illness is getting more airtime now. I do tend to find that the "ignorant" people watch those segments and make all the right noises, then carry on treating you the same way. Does anyone else experience this? One of the most important things though, in my opinion, is making us all feel less alone. It brings us together, and our voices are louder when we are a team.
is a great forum for people with ME/CFS
The sign is tricky as you say, a wheelchair is instantly recognisable but then it does reinforce the idea that disability equals wheelchair user which is just not right.
I think getting people talking is key and this was the whole point of #MoreThanMeetsTheEye - to get us all talking about disability in its many forms.
Everyone is fighting their own battle and I just wish we could all be a little more open minded to that, a little kinder and a little more compassionate.
Thanks all so much for getting involved with this discussion! This is how we can change perceptions.
Sam x
My answer... Its paralysed from the seat down.
I laughed but they didn't, typical!
I get a lot of comments about how I'm too young to know what pain is, and just to be positive and there's such a lack of understanding around chronic illness. Social media and connecting with people in similar situations is what keeps me going! But I need to get better at reply to comments like 'well you look fine to me' because I normally don't know what to say and then think of comebacks 20 minutes later!
I wouldn't worry about replies to these people, you know what wrong and how it feels, they are not important.
Unfortunately it is old people who seem to be the rudest, image found younger people to be polite and helpful. I am regularly challenged by old people when I pull in to a disabled bay and my daughters who are 20 and 22 are always saying how old people are rude to them on buses or in queues, its a shame people have to be like it.
When I was younger I would happily argue with someone who had made a nasty comment or something else that I wasn't happy with, now? Well now I just smile at them, people respond to anger or sarcasm with anger but smile and they get confused and don't know what to do.
But now, if I forget to take my medication or I don't take extra to account for bodily stress, I get exhausted. Not to mention the sensory processing difficulties I have means that pretty much done with the world by 5pm, I'm exhausted and need a quiet space. I often use lifts instead of stairs because stairs tend to tire me out. I do think people assume I'm just lazy. But my exhaustion coupled with a knee problem I've not diagnosed yet due to falling down a flight of stairs when I was 14 (no depth perception - yay), makes stairs something that really takes a lot out of me.
I wish more people asked if using the stairs was okay, instead of just assuming. And also I wish the bloody Tube came with more escalators. People just assume because I can walk on my two feet that I'm fine with stairs.
Also, Chrissie, I don't have dyspraxia but I do have dyscalculia which is probably under the umbrella of my autism. I find it incredibly difficult to do simple maths in my head or remember how much each coin represents. Especially because I have a good grasp of words, people often assume I am joking! And I have got the rude look during a busy shop time when I can't collect all of my stuff fast enough. I wish they'd stop putting coins on top of bills in your hand because that just makes it more difficult! It's why I prefer self-checkout instead.
My commute can be a complete nightmare, I always sit next to the loo on a train if I can and when I get on the tube if I'm having a bad day I do need to sit or I will be desperately trying to control my tummy so I don't have an accident, even if I'm just going one stop this is terrifying. IBS seems to be one of those umbrella diagnoses and I've been told repeatedly by close friends that it doesn't exist and I need to pull myself together.
My condition is real, it affects me every day and I believe I have a right to use accessible facilities. I would love to not need to, but they are there for those that need them and we shouldn't have to feel guilty or judged for using them. Conversations like these are the way to change peoples perceptions
Dementia is another of those invisible disabilities. I came across this thread just after I'd posted a story on my ctrlalzshift.org website about our changing-room experiences. My wife, who has Alzheimers, is at the stage where she really struggles with clothes and needs help when trying on new clothes or changing at the pool. Eyebrows are raised if I ask to go in with her - and often it's just not possible.
One solution might be a badge that we could train the public to recognise - just in the same way that everyone understands the significance of a poppy, or the Blue Badge (if they bother to look). For my Alzheimers campaign, I've suggested a red knotted handkerchief - the 'not-forgetting' angle. But perhaps it should be something a little more general, to include anyone who has a disability that may not be obvious. Something that can be worn with pride rather than embarrassment.
I suppose then we'd have to think about a way where the badge wasn't open to abuse or misuse ... but maybe others have ideas.