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Guest post: #MoreThanMeetsTheEye - Invisible Disability Awareness

SoBadAssSamSoBadAssSam Posts: 7Member Listener
edited July 2017 in Guest blogs

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.

Sam with a sign saying 'My name is Sam. My invisible disability is ulcerative colitis. #MoreThanMeetsTheEye



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.

Poster of a quote by David saying 'I have to use a disabled loo as my wife has dementia and will not wait outside the gents so she has to come in with me. I lost her for two hours once.'

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.

Quote by Rachel saying 'People don't understand that living with a chronic illness is like being held under water trying to fight back'.

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.

Quote from Lynn saying 'Since being diagnosed, my world has shrunk down to four walls. People can't see I'm ill and so they judge me'.

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

  • SoBadAssSamSoBadAssSam Posts: 7Member Listener
    A few comments I have had already...

    "For those with an invisible disability, we are seen as lazy and inconsiderate, but we have as much rights as someone in a wheelchair" - Kait

    "People don't understand that living with a chronic illness is like being held under water trying to fight back" - Rachel
  • rachelclrachelcl Posts: 34Member Connected
    I have right-sided hemiplegia and although my disability isn't actually invisible, because I don't use a wheelchair or a stick I have had neighbours shouting "WALK PROPERLY!" at me, people getting angry that I'm allowed out in public and people objecting when I sit on "priority" seats on buses.
  • SoBadAssSamSoBadAssSam Posts: 7Member Listener
    It is awful and that is why I want to campaign for better understanding around invisible disabilities! x
  • Jesstilly1Jesstilly1 Posts: 2Member Listener
    I don't think it helps that the sign for Disabled facilities in public places is of someone in a wheelchair. People can be very 'black and white' in the way they think and seeing that image makes them think the facility is just for wheelchair users. We need a new design!
  • ShadowShadow Posts: 2Member Listener
    edited April 2015
    Hello Jesstilly1,

    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.
  • Zec RichardsonZec Richardson Posts: 147Member Pioneering
    Hi Sam, I enjoyed your blog post and its amazing how it went viral, even other BBC news website, you must have been so pleased.

    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
  • socksoffsocksoff Posts: 32Member
    I have a son with autism and severe learning difficulties and we use the disabled toilet as he can't cope with the noise of hand driers (he has a VERY loud scream!) so we need to be in control.  He is also now 12 years old and I have to go in with him which is harder in a cubicle in the ladies and creates its own eyebrow raising!  I agree that the wheelchair logo does much to reinforce attitudes that disability can only be physical and visible.
  • Zec RichardsonZec Richardson Posts: 147Member Pioneering
    I have been thinking about the sign, I asked my family as well.
    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.
  • rachelclrachelcl Posts: 34Member Connected
    I've often heard people talking about something called "the Parallel Olympics for people in wheelchairs". Especially around the time that the London Paralympics took place ...
  • RosemaryRosemary Posts: 11Member Listener
    As a wheelchair user I have often felt lucky that my impairment was so clear to see and my access needs quite straightforward to meet.  I am not for one moment suggesting it has been easy, but at least I don't have to do the awkward explaining that I know some of my friends have had to do.  As a disability equality campaigner I do get concerned that when people hear the word 'disabled' they automatically think wheelchair.  This can mean that the needs of people with invisible impairments are not considered and therefore go unmet.
  • lisalouise999lisalouise999 Posts: 17Member Listener
    edited April 2015
    I'm 27 and have had ME/CFS for 4 years. I get nasty looks from the elderly when parking in disabled spaces, I have a blue badge clearly on display. I get nasty looks from the elderly when I use the disabled toilets, I have to wear incontinence pads incase of accidents.

    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.
  • Zec RichardsonZec Richardson Posts: 147Member Pioneering
    Yes family can also point the finger and it hurts even more than strangers because we hoped they would understand.
    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.
  • lisalouise999lisalouise999 Posts: 17Member Listener
    Yeah we have a dedicated "team" as well. They don't actually do much other than give you leaflets I'm afraid.

    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.
  • Zec RichardsonZec Richardson Posts: 147Member Pioneering
    I have found social media to be very helpful and http://www.brainfog.org/phpBB3/
    is a great forum for people with ME/CFS
  • SoBadAssSamSoBadAssSam Posts: 7Member Listener
    I think it's the use of language. I used the term 'disabled' toilet and was told I should say 'accessible'. Straight away the connotations go from wheelchair user to a toilet that is accessible to those who need it.

    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
  • Zec RichardsonZec Richardson Posts: 147Member Pioneering
    I was asked what is a disabled toilet?
    My answer... Its paralysed from the seat down.
    I laughed but they didn't, typical!
  • lisalouise999lisalouise999 Posts: 17Member Listener
    Lol that cracked me up! Thanks I needed a laugh, I'm a sunny person but the restaurant thing got me down. Lol I'm still chuckling away, my husband will think I've lost my marbles!
  • roseannaroseanna Posts: 1Member
    Zec I just got ridicously excited to see someone else with CRPS! I have CRPS and I think also CFS/ME. 

    Because I'm young (18, but look about 14!) people always feel like they can argue with me using priority seats on buses. 
    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!
  • Zec RichardsonZec Richardson Posts: 147Member Pioneering
    Many people with CRPS have ME/CFS, fibro or something similar.

    I wouldn't worry about replies to these people, you know what wrong and how it feels, they are not important.
  • lisalouise999lisalouise999 Posts: 17Member Listener
    Roseanna I'm sorry to say that I'm nearly 28 and have the same problem. I am judged on being "too young" or "looking fine" very often. I'm trying to just think their ignorance is their problem, and try not to make it mine. Easier said than done tho!
  • Zec RichardsonZec Richardson Posts: 147Member Pioneering
    I had a knee replacement when I was 42 (ish), the consultant said I was young, that made my day!

    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.
  • RosieroorooRosierooroo Posts: 1Member
    I have dyspraxia which affects my co-ordination balance fine and gross motor skills and spacial awareness people can often give me dirty looks and stares when I can't co ordinate my body or bump into people by accident
  • Chrissie LoweChrissie Lowe Posts: 1Member Listener
    edited April 2015
    I also have Dyspraxia so I have to do things at a slower pace when getting served in a shop so it takes me longer to add up coins and to put change I've been given into my purse and to pack my bag and put my purse back into my back. The amount of shop assistants that have stood there sighing and then have shouted "Next!" and started serving other customers over my shoulder (!) while I'm still stood in front of them scrabbling to get my stuff together, is numerous and appalling! Sometimes they slide your stuff down to the bottom really quickly, then tell you the price and look pointedly at you, then when you pay - before you've packed even a third of your shopping, they start sending a load of the next persons shopping down, which gets mixed up with yours! Then they often say loudly to that customer "So sorry you had to wait SO LONG." 

    I either ask for help with my packing nowadays if I have more than 3 items, or I ignore the payment demand until I'm complettley packed and then don't move my bag from the till until everything is safely back into it, as I can't juggle everything at once.
  • AndrenaAndrena Posts: 2Member Listener
    I understand exactly what you mean about invisible disabilities. I am disabled and I also have depression and people can't cope with that either. 
    As for the disabled toilet sign. Maybe they could have the wheelchair but also write on it "don't judge people on just what you see".
  • LolaOlsonLolaOlson Posts: 9Member Listener
    With my disability, I was taught from an early age not to see myself as disabled. I had a pretty ableist upbringing where my parents would tell me that getting my blood drawn frequently, managing daily medication and injections just wasn't that difficult because "at least you aren't in a wheelchair". So because my disabilities are more or less invisble (I believe my autism becomes pretty visible in certain social situations), I've actually been taught to not even see them myself.

    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.
  • SoBadAssSamSoBadAssSam Posts: 7Member Listener
    Thank you all so much for getting involved and sharing your stories.  I think the more we talk about it, the less taboo it becomes. 
  • Sam Dexter BASam Dexter BA Posts: 1Member Listener
    I am arthritic, bipolar and have PTSD. Mostly my disabilities are invisible. I manage my life to cope with my symptoms, but I get funny looks and comments when I use accessible toilets. Sometimes I'm in too much pain to walk the extra 10 yards to the ladies. Sometimes I'm too anxious to use the ladies because there are a lot of people in there. Most of the time I use the standard toilets. My biggest issue is being told I don't look depressed/manic/anxious. Erm what do people with chronic mental health issues look like?
  • LalLal Posts: 1Member Listener
    Sam, what you are doing to raise awareness is amazing and its so great to hear all of the stories that are coming out. I suffer from chronic IBS-D, which coupled with anxiety sometimes means I take an hour to leave the house in the morning. I carry a NKS key because sometimes I need to use the toilet suddenly and urgently. I have only used the key a few times when I have really had to, but feel comfort from having it with me. Especially as loads of public toilets seem to be disappearing and the loos at my local station are shut after morning commute time.

    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 :)
  • Judi VianJudi Vian Posts: 1Member Listener
    I have fibro, IBS, spina bifida occulta, and fibrocystic lung disease and have used oxygen about 20 yrs. I try not to be "disabled" but hard at times. I have had the problem of being judged about my oxygen use. People assume I was or am a smoker. No-not now--not at all. If only people could walk a mile in our shoes or live a day in our world. Keep looking yourself in the eye and telling yourself, "I am okay and I will get through this." We are strong through our infirmities.
  • amylou86amylou86 Posts: 2Member
    I am delighted to see forums such as this, where people can share their experiences. I was diagnosed with ulcerative colitis last year. It is difficult for people to understand just how terrible this can be to live with. People struggle to understand what they can not see. I was guility of this myself prior to experiencing it first hand. There should be much more awareness and it begins with forums such as this, so people can learn about it. Any advice or information I can get from anyone else suffering with UC would be greatly appreciated.
  • SoBadAssSamSoBadAssSam Posts: 7Member Listener
    Hi Amylou, I write a blog about life with Ulcerative Colitis at www.sobadass.me - please come over and have a read x
  • AlanCtrlAlzShiftAlanCtrlAlzShift Posts: 2Member
    Thanks for this, Sam, and for getting the campaign started.

    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.
  • Charlotte NolanCharlotte Nolan Posts: 1Member
    good for you its a view a lot of people need to change my partner has a visual imparment and is reg blind, he can see lots of things but also cant see a lot of things, people often find it difficult to understand that blindness has a wide spectrum as many dissabilitys do why its any of their business any way is beond me, we do get fed up explaining because why should we have to explain any thing? he runs his own business we have a happy healthy family and their are a lot more people in the world that need their consern. i guess its a side of human nature but not a pritty one. there should be no need to explain or wear a sign people should just open up their narrow minds
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