more than meets the eye invisible disability cassidy little

More Than Meets The Eye – Campaign for Invisible Disabilities Awareness

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.

sam cleasby tut disabled toilets more than meets the eye

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

invisible disabilities more than meets the eye

 

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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.

You can find me on twitter @so_bad_ass, Facebook and Instagram.

Let’s make a change and get people talking.

✌️& ❤️

Sam x

 

You can contact Scope on their website or by phone on 0808 800 3333 or email at ku.gr1467229943o.epo1467229943cs@en1467229943ilple1467229943h1467229943

57 replies
  1. Carrie Leyland
    Carrie Leyland says:

    Sounds great Sam. Here’s mine: It might look like I could “use the exercise and should use the stairs not the lift” but my body is screaming at me to lie down every second I’m upright and I’m about to faint #PoTS #Dysautonomia #MoreThanMeetsTheEye

    Reply
  2. Carrie Leyland
    Carrie Leyland says:

    Sounds great Sam. Here’s mine: It might look like I could “use the exercise and should use the stairs not the lift” but my body is screaming at me to lie down every second I’m upright and I’m about to faint #PoTS #Dysautonomia #MoreThanMeetsTheEye

    Reply
  3. Geraldine
    Geraldine says:

    Fabulous news Sam. I have MS & have been tutted at numerous times for using accessible loos as an apparently able-bodied person. Do you know, I would love if I got the whole sequence of stimuli telling me I need a wee, but I go from zero to MUST GO NOW in a blink some days. Other days I might not be that lucky. And often I have two young kids in tow – being desperate to get to a loo & trying to herd two Skippy the Kangaroos along – I’m terribly sorry, but I don’t have time to justify myself to the judgey folk who think I’m just being lazy & taking the easy option. Have my MS for me you lot & see how easy you find it! You can’t have the kids though, I’m afraid. I shall need them to push the wheelchair for me one day when my legs give up on me & my arms don’t function well enough to control an electric chair myself. (I love them to their very bones as well, but that’s by-the-by & the judgey folk already have me down as a terrible person, so they wouldn’t believe it anyway) Until then, I shall continue to walk into the ‘disabled’ loos when I need to & the ‘normal’ when I don’t. And I shall continue to hold my head high, pretending that your judgmental stares, disapproving tuts and not-so-quietly whispered comments don’t have a negative affect me, even though it’s you who are in the wrong.

    Reply
  4. Geraldine
    Geraldine says:

    Fabulous news Sam. I have MS & have been tutted at numerous times for using accessible loos as an apparently able-bodied person. Do you know, I would love if I got the whole sequence of stimuli telling me I need a wee, but I go from zero to MUST GO NOW in a blink some days. Other days I might not be that lucky. And often I have two young kids in tow – being desperate to get to a loo & trying to herd two Skippy the Kangaroos along – I’m terribly sorry, but I don’t have time to justify myself to the judgey folk who think I’m just being lazy & taking the easy option. Have my MS for me you lot & see how easy you find it! You can’t have the kids though, I’m afraid. I shall need them to push the wheelchair for me one day when my legs give up on me & my arms don’t function well enough to control an electric chair myself. (I love them to their very bones as well, but that’s by-the-by & the judgey folk already have me down as a terrible person, so they wouldn’t believe it anyway) Until then, I shall continue to walk into the ‘disabled’ loos when I need to & the ‘normal’ when I don’t. And I shall continue to hold my head high, pretending that your judgmental stares, disapproving tuts and not-so-quietly whispered comments don’t have a negative affect me, even though it’s you who are in the wrong.

    Reply
  5. aradiasilvermoon
    aradiasilvermoon says:

    I have seizures as well as multiple stomach and bowel issues. My diseases are chronic, treatable, and invisible. I once got fired for “sleeping on the job” when in reality I’d had a grand mal seizure the night before. When I have these my seizure threshold lowers making other, smaller ones, more common during this time. Here is my quote:

    You call it staring off into space. I call it a simple partial seizure.

    Reply
  6. aradiasilvermoon
    aradiasilvermoon says:

    I have seizures as well as multiple stomach and bowel issues. My diseases are chronic, treatable, and invisible. I once got fired for “sleeping on the job” when in reality I’d had a grand mal seizure the night before. When I have these my seizure threshold lowers making other, smaller ones, more common during this time. Here is my quote:

    You call it staring off into space. I call it a simple partial seizure.

    Reply
  7. Richard talbot
    Richard talbot says:

    I have never used Twitter so not sure how to hash tag something but mine would be
    It my disability not yours so tut off 🙂

    Reply
  8. Richard talbot
    Richard talbot says:

    I have never used Twitter so not sure how to hash tag something but mine would be
    It my disability not yours so tut off 🙂

    Reply
  9. Tasha
    Tasha says:

    I have never experienced tutting, etc. but as someone who reads body language and facial expressions, I can tell when someone does not believe me. I am deaf; complete hearing loss in left ear and severe loss in right. Despite the severity of my disability, my speech is perfect and I can seemingly navigate daily life. But what people don’t understand is our entire society is built on the ability to hear. It is a struggle to keep up with this world and is exhausting. I never directly tell someone I am deaf as I am sick of watching that subtle change in peoples body language telling me that they think that I am lying. An example of this was when I went for a job interview and since the interviewer directly asked me, I mentioned my deafness and he did nothing to hide the face he didn’t believe me. I understand that people people cannot completely control what their body expresses but I just hope that no one openly judges me a liar when I mention my deafness. I guess this is my quote:

    What is my disability supposed to sound like?

    Reply
  10. Tasha
    Tasha says:

    I have never experienced tutting, etc. but as someone who reads body language and facial expressions, I can tell when someone does not believe me. I am deaf; complete hearing loss in left ear and severe loss in right. Despite the severity of my disability, my speech is perfect and I can seemingly navigate daily life. But what people don’t understand is our entire society is built on the ability to hear. It is a struggle to keep up with this world and is exhausting. I never directly tell someone I am deaf as I am sick of watching that subtle change in peoples body language telling me that they think that I am lying. An example of this was when I went for a job interview and since the interviewer directly asked me, I mentioned my deafness and he did nothing to hide the face he didn’t believe me. I understand that people people cannot completely control what their body expresses but I just hope that no one openly judges me a liar when I mention my deafness. I guess this is my quote:

    What is my disability supposed to sound like?

    Reply
  11. absolutecynic
    absolutecynic says:

    Does this also cover mental health issues? Though I know that I don’t have the issue of the disabled toilet, but I still have judgement for being unresponsive or missing days at work/uni for everything getting to hard and not being able to get out of bed, let alone leaving the house. I have often been told that I am lazy or just not trying hard enough.
    I love what you’re doing, and your blog is inspirational!

    Reply
    • sam
      sam says:

      Absolutely! This is about raising awareness of the fact that many of us have all manner of invisible issues and that society needs to be a little more compassionate, caring and understanding x

      Reply
  12. absolutecynic
    absolutecynic says:

    Does this also cover mental health issues? Though I know that I don’t have the issue of the disabled toilet, but I still have judgement for being unresponsive or missing days at work/uni for everything getting to hard and not being able to get out of bed, let alone leaving the house. I have often been told that I am lazy or just not trying hard enough.
    I love what you’re doing, and your blog is inspirational!

    Reply
    • sam
      sam says:

      Absolutely! This is about raising awareness of the fact that many of us have all manner of invisible issues and that society needs to be a little more compassionate, caring and understanding x

      Reply
  13. Cara bemrose-Williams
    Cara bemrose-Williams says:

    As the parent of an Autistic 4-year- old, I’ve experienced more than my fair share of tutting. Yes I take him into the disabled toilets sometimes because he has sensory processing differences and is incredibly distressed by the noise of the hand driers. He probably looks perfectly calm and normal going into the quiet environment of the disabled toilet. He doesn’t look quite so normal in the Ladies screaming with his hands over his ears. I can’t win, and get the tuts either way. Try and cut us some slack tutters, we’re just trying to get through the day. #MoreThanMeetsTheEye

    Reply
  14. Cara bemrose-Williams
    Cara bemrose-Williams says:

    As the parent of an Autistic 4-year- old, I’ve experienced more than my fair share of tutting. Yes I take him into the disabled toilets sometimes because he has sensory processing differences and is incredibly distressed by the noise of the hand driers. He probably looks perfectly calm and normal going into the quiet environment of the disabled toilet. He doesn’t look quite so normal in the Ladies screaming with his hands over his ears. I can’t win, and get the tuts either way. Try and cut us some slack tutters, we’re just trying to get through the day. #MoreThanMeetsTheEye

    Reply
  15. Sal
    Sal says:

    I’m so glad to see some recognition for people living with an invisible disability! I’ve been living with a form of chryonic myofascial pain for almost 3 years now. The pain is so bad that my muscles have become solid and when I move I feel and hear a crunching of my muscles against my bones. The spasms are so extreme that it feels as though my head is being squeezed so so tight and the muscles in my chest and back are so effected that it is hard for me to breathe sometimes. I have found it really difficult to get back to work as I have unfortunately encountered alot of discrimination from employers as I need voice recognition software to do my job and would need slightly reduced working hours as I should not overdo it, otherwise my pain gets worse. I have been trying to find a suitable job/employer for over a year now and time and time again I don’t hear back about a job as soon as an employer sees that I was unable to work for a few years due to my injury. I have tried approaching loads of organisations and no one has been able to help. A government organisation/scheme called Workchoice are trying to help me find work, but they say that there is not much they can do as they cannot find leads/jobs for highly skilled workers. Instead they say that they only really are able to find work for lower skilled workers…..so ultimately it seems there is no organisation/body out there who can help someone with high level skills and experience find work….only very basic work. Before my accident/injury I was doing well in my career and had no problem finding work. Now I feel as though I’m stuck and no is there to help.

    Reply
  16. Sal
    Sal says:

    I’m so glad to see some recognition for people living with an invisible disability! I’ve been living with a form of chryonic myofascial pain for almost 3 years now. The pain is so bad that my muscles have become solid and when I move I feel and hear a crunching of my muscles against my bones. The spasms are so extreme that it feels as though my head is being squeezed so so tight and the muscles in my chest and back are so effected that it is hard for me to breathe sometimes. I have found it really difficult to get back to work as I have unfortunately encountered alot of discrimination from employers as I need voice recognition software to do my job and would need slightly reduced working hours as I should not overdo it, otherwise my pain gets worse. I have been trying to find a suitable job/employer for over a year now and time and time again I don’t hear back about a job as soon as an employer sees that I was unable to work for a few years due to my injury. I have tried approaching loads of organisations and no one has been able to help. A government organisation/scheme called Workchoice are trying to help me find work, but they say that there is not much they can do as they cannot find leads/jobs for highly skilled workers. Instead they say that they only really are able to find work for lower skilled workers…..so ultimately it seems there is no organisation/body out there who can help someone with high level skills and experience find work….only very basic work. Before my accident/injury I was doing well in my career and had no problem finding work. Now I feel as though I’m stuck and no is there to help.

    Reply
  17. Kaye Lewis (Eumi)
    Kaye Lewis (Eumi) says:

    Often the only time I am seen out is because I’m having a better day as I’m often bedridden due to severe pain. I’m disabled with Fibromyalgia, Hypermobility in my hips which my tendons are very weak in that area. When they partially pop out it is excruciatingly painful, my legs give out and can be heard by others. I have Morphine patches which are not visible. Many people have never heard of my health issues. I take lots of medication. Also have Bipolar Affective Disorder.

    I heard a group of women discussing me when they saw me getting out of the car (parked in disabled space) albeit very slowly.
    Oh look!! Another one probably on benefits…scrounger…she’s not disabled…she’s walking!!!

    (I run my own business making Jewellery and create Lampwork glass beads)

    Another one, collecting my daughter from school parking on double yellow lines and displaying my blue badge.
    Lollipop lady: Oi you can’t park there
    Me: yes I can I’m disabled
    Lollipop lady: you’re not disabled…you’re walking.
    I sobbed when I got back to the car and all the way home. I complained to the school about the lollipop lady who then carried on to give me dirty looks when she saw me.

    My life is hard enough without having to justify myself to others. I often stay home now. Fibromyalgia is syndrome of many health issues. Affecting the brain, soft tissues, nerves, digestive system (ibs), and much more. Kaye x

    Reply
  18. Kaye Lewis (Eumi)
    Kaye Lewis (Eumi) says:

    Often the only time I am seen out is because I’m having a better day as I’m often bedridden due to severe pain. I’m disabled with Fibromyalgia, Hypermobility in my hips which my tendons are very weak in that area. When they partially pop out it is excruciatingly painful, my legs give out and can be heard by others. I have Morphine patches which are not visible. Many people have never heard of my health issues. I take lots of medication. Also have Bipolar Affective Disorder.

    I heard a group of women discussing me when they saw me getting out of the car (parked in disabled space) albeit very slowly.
    Oh look!! Another one probably on benefits…scrounger…she’s not disabled…she’s walking!!!

    (I run my own business making Jewellery and create Lampwork glass beads)

    Another one, collecting my daughter from school parking on double yellow lines and displaying my blue badge.
    Lollipop lady: Oi you can’t park there
    Me: yes I can I’m disabled
    Lollipop lady: you’re not disabled…you’re walking.
    I sobbed when I got back to the car and all the way home. I complained to the school about the lollipop lady who then carried on to give me dirty looks when she saw me.

    My life is hard enough without having to justify myself to others. I often stay home now. Fibromyalgia is syndrome of many health issues. Affecting the brain, soft tissues, nerves, digestive system (ibs), and much more. Kaye x

    Reply
  19. Jenn
    Jenn says:

    I have fibromyalgia, albeit mildly, and whilst it might see like I’m living a “normal” life I am always having to pace myself. Yes, I may be dead on my feet, struggling to function and in a lot of pain one day, then in the gym the day after – this doesn’t mean the bad day wasn’t real. I go to the gym as the exercise helps me to keep the pain at bay (not the fatigue, unfortunately – nothing seems to work there).

    I can walk no problems but I find standing difficult (so tend to move quite a bit when queueing etc). Stuck in a long toilet queue in Manchester the stroppy attendant wouldn’t allow me to use the disabled toilet as to her it looked like I was trying to jump the queue, not that I was finding it really difficult to stay stood up whilst waiting.

    Reply
  20. Jenn
    Jenn says:

    I have fibromyalgia, albeit mildly, and whilst it might see like I’m living a “normal” life I am always having to pace myself. Yes, I may be dead on my feet, struggling to function and in a lot of pain one day, then in the gym the day after – this doesn’t mean the bad day wasn’t real. I go to the gym as the exercise helps me to keep the pain at bay (not the fatigue, unfortunately – nothing seems to work there).

    I can walk no problems but I find standing difficult (so tend to move quite a bit when queueing etc). Stuck in a long toilet queue in Manchester the stroppy attendant wouldn’t allow me to use the disabled toilet as to her it looked like I was trying to jump the queue, not that I was finding it really difficult to stay stood up whilst waiting.

    Reply
  21. Tina
    Tina says:

    I’ve had hip dysplasia since birth. Had my first hip replacement 5 years ago and my second one 14 weeks ago. I found when I was on my crutches people were a lot more understanding because they had a physical object to recognise that I had a problem. Now I’m supposedly cured, able to walk and back at work the world is full of ignorant people. Because when I’m tired I walk funny they think its perfectly acceptable to stare and whisper.

    Reply
  22. Tina
    Tina says:

    I’ve had hip dysplasia since birth. Had my first hip replacement 5 years ago and my second one 14 weeks ago. I found when I was on my crutches people were a lot more understanding because they had a physical object to recognise that I had a problem. Now I’m supposedly cured, able to walk and back at work the world is full of ignorant people. Because when I’m tired I walk funny they think its perfectly acceptable to stare and whisper.

    Reply
  23. robotlilly
    robotlilly says:

    I have mental health problems, chronic pain, hemiplegia and IBS I look ‘normal’ but standing on moving buses or trains is hard because my balance is bad and sometimes my back hurts to the point that standing makes me want to cry, because I’m young I get nasty looks if I sit in priority seats and people assume I’m lazy if I use the lift and not the stairs (being overweight doesn’t help). The medication for my mental health makes me tired and sometimes the combination of medication, hemiplegia and pain makes me look drunk when I walk. I don’t use accessible toilets often but sometimes something upsets my stomach and I need to go NOW then I use the nearest toilet available.

    Reply
  24. robotlilly
    robotlilly says:

    I have mental health problems, chronic pain, hemiplegia and IBS I look ‘normal’ but standing on moving buses or trains is hard because my balance is bad and sometimes my back hurts to the point that standing makes me want to cry, because I’m young I get nasty looks if I sit in priority seats and people assume I’m lazy if I use the lift and not the stairs (being overweight doesn’t help). The medication for my mental health makes me tired and sometimes the combination of medication, hemiplegia and pain makes me look drunk when I walk. I don’t use accessible toilets often but sometimes something upsets my stomach and I need to go NOW then I use the nearest toilet available.

    Reply
  25. tonijames
    tonijames says:

    Thank you for this, I am a cleaner and see “able bodied” people using the disabled toilet all the time. I will never judge them again. I notice that disabled toilets often aren’t cleaned as well as the able bodied ones, but my supervisor was an ex NHS nurse, so in my store, I give them as much, if not more, time as the able bodied ones. They take longer because there are more elements to clean, and you have to be careful not to pull the red cord by accident (:-)) but I know that people with chronic illnesses need a more sterile environment, not a less sterile one, As a note, if there is only a disabled toilet on one floor, people shouldn’t be judging you anyway. Finally, what do single dads with young daughters do? They can’t use the ladies or the gents (if she doesn’t need nappies). So even people without disabilities may have to use these toilets.

    Reply
  26. tonijames
    tonijames says:

    Thank you for this, I am a cleaner and see “able bodied” people using the disabled toilet all the time. I will never judge them again. I notice that disabled toilets often aren’t cleaned as well as the able bodied ones, but my supervisor was an ex NHS nurse, so in my store, I give them as much, if not more, time as the able bodied ones. They take longer because there are more elements to clean, and you have to be careful not to pull the red cord by accident (:-)) but I know that people with chronic illnesses need a more sterile environment, not a less sterile one, As a note, if there is only a disabled toilet on one floor, people shouldn’t be judging you anyway. Finally, what do single dads with young daughters do? They can’t use the ladies or the gents (if she doesn’t need nappies). So even people without disabilities may have to use these toilets.

    Reply
  27. Sandi Snyder
    Sandi Snyder says:

    I had a hip replacement and need the higher toilet in the handicapped stall. One the stall was locked with no one in it. A lady pointed out the others that were open. Luckily there was one with bars in it that helped me.#MoreThanMeetsTheEye

    Reply

Trackbacks & Pingbacks

  1. […] he had one leg! Maybe he had anxiety problems or autism.  We just don’t know and as the More Than Meets The Eye campaign shouts about, there are so many invisible or hard to see medical issues that millions of people […]

  2. […] an able-bodied person.  That incident and her response prompted a campaign to show that there is more than meets the eye when it comes to disability, that everyone should think twice before you judge […]

  3. […] the globe as we speak and I just thought it was yet another great example of why campaigns like #MoreThanMeetsTheEye is so […]

  4. […] the globe as we speak and I just thought it was yet another great example of why campaigns like #MoreThanMeetsTheEye is so […]

  5. […] recently went viral. Sam also uses the hashtags #stoppoobeingtaboo and #MoreThanMeetsTheEye to raise public awareness of these hidden disabilities. And she is generally […]

  6. […] recently went viral. Sam also uses the hashtags #stoppoobeingtaboo and #MoreThanMeetsTheEye to raise public awareness of these hidden disabilities. And she is generally […]

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