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To the woman who tutted at me for using an accessible toilet

Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
edited November 2018 in Guest blogs

I run a blog called So Bad Ass about life with Inflammatory Bowel Disease and an ostomy bag and how it feels to live with this illness, surgeries, medications and recovery. In February 2015, 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.

And as our theme for the next two weeks is around toilets, I thought I would take a look back on this event as unfortunately, I don't feel that things are getting any better.  You can read part of the letter below and check out the original post here.

woman with short hair lifting her brown top to show an ileostomy bag

Dear lady who loudly tutted at me using the accessible loos,

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. You saw me without a wheelchair. Without any visible sign of disability.

You tutted loudly as I rattled the handle with my hands that work perfectly and my able voice call to my kids that I’d be out in just a minute.

My lack of wheelchair may have suggested to you that I was some lazy cow who didn’t care. Some inconsiderate b***h who was using something I wasn’t entitled too. (I actually carry a card to explain that I’m entitled to and have a disability key if you’d have cared to ask). You may have seen my face blushing as I caught your eye and assumed I was showing guilt at blagging the accessible loos.

The fact is that I have no bowel. I sometimes have accidents which means a large toilet that has a sink right by me means I can clean myself up when things go awry.

Whilst I’m at it, I’d like to address the cleaner in the supermarket ladies toilets I used this week. As I ran in, knees together, bursting through the door and running to the cubicle, I’m sorry that the noise of my (lack of) bowels made you burst out laughing.

I can actually take the sniggering as since I had a pouch made from my small intestine because my disease ridden colon was removed during surgery, the noise I make when I defecate is hilariously loud. Seriously, I get it. It’s comedic in it’s volume.

But before you ran outside the loos and called to your friend “OH MY GOD! You should hear the noise in there!!! I wouldn’t go in if I was you!!!!” Perhaps you could have noted my daughter who was waiting outside with our trolley because her mum had had to leave her stranded to run to the toilet. Perhaps you could have stopped and heard me sobbing with pain because the acid in my stools has no way to be neutralised because I don’t have a large intestine and so opening my bowels actually burns my skin.

Perhaps you both could have shown a little empathy, a little compassion, a little understanding.

Have you faced barriers to using accessible toilets? Let us know what has happened and how you dealt with it.
Senior online community officer


  • Ami2301Ami2301 Community Co-Production Group Posts: 7,489 Disability Gamechanger
    I am so sorry you had to experience this @Sam_Scope :( Are you going to complain to the store?
    Disability Gamechanger - 2019
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    It was a few years ago @Ami2301 but honestly, it happens all the time!
    Senior online community officer
  • Richard_ScopeRichard_Scope Posts: 2,736

    Scope community team

    It is good to be reminded of how a little empathy can go along way. Really powerful @Sam_Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,489 Disability Gamechanger
    I don't understand why it is so difficult for others to have empathy. If you went back to that moment, would you have said something to her?
    Disability Gamechanger - 2019
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Its hard to say, right now I think yes, I would pull them up, inform, educate and hopefully change their views, but I know that when it happens, I shrink, the words stick in my throat, I get hot and red faced, I feel embarrassed and upset and it is so hard to stand up for myself in the moment!
    Senior online community officer
  • elizabethrelizabethr Member Posts: 5 Connected
    I understand abd empathise completely. I have  crohns, IBS and Fybro all of which are invisible. I have had peopke glare at me but usually when I've come out and obviously kept people waiting. I used to feel the need to explain/apologise but I dont now. I have a "i can't wait" from the crohns association and now have a radar key but before that I had a very embarrassing experience. I was out at a pub type restaurant and went and asked for the key for the disabled toilet, one the look of disdain I got from the member of staff would have turned you to stone but worse was the that,  due to the key always going missing,  it was attached to the most enormous empty plastic ice cream container which I then had to carry with me through the crowded pub. I am very grateful now though to the work of Action for ME and the Crohns association for encouraging a lot of places to add the the wording "some illnesss are invisible 
  • berthA22berthA22 Member Posts: 3 Connected
    I do not have bowel problem,but I do sympathise with your problem.I have alung problem,some days are better than others,and sometimes I can walk a bit more than others. Some people see me walking and question why I need a  mobility scooter,I woild not use one if I did not need to. Any form of disabiity is a challenge to a persons life.Always remember that the **** does think,ignore and enjoy your children and family,and life to the full.
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Very sad reading, @Sam_Scope, not the less sad for the knowledge that I might make an unsympathetic judgment from time to time. More and more it is what we are taught to do through the media, endorsing and exploiting the government's drive to personify the unemployed, the sick and the vulnerable as 'cheats'. These are bloody awful times.
    Thank you for making me think, and for your courage.
  • Angiebabes2410Angiebabes2410 Member Posts: 70 Courageous
    My ex husband had crohns disease and many many times people tutted at him because in their opinion he didn't look disabled enough to use the disabled toilet, me on the other hand they hardly ever had a problem with because I was in a wheelchair. He carried a card saying he was entitled to use the disabled toilet but some people have opinions about everything that is none of their business. I get huffed at for parking in a disabled parking space until they see me getting my wheelchair out of the car but it's so embarrassing when people judge you wrongly xx hugs
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I was very moved by your story . Thanks for sharing. Personally if you need to use the disabled toilet go ahead anyone. I don’t need to know why. I wish everyone else would mind their own business. On a side note I might laugh if someone next to me made loud toilet noises in the next cubicle as I have what I call inappropriate humour. You know like laughing at funerals when someone sings terribly? I have to kick myself lol. But I would probably apologise profusely or ask you if you were okay.  I have ibs and anxiety and sometimes I have to get to a toilet. It’s terrifying. I usually go for the closest. I do prefers the disabled toilets though. 
    I am a fibro warrior !💜♏️
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Sam_Scope Thank first for sharing what to many is a difficult and intimate part of our lives.

    Understand and do know have issues here with certain members of the public who are critical of those using such facilities. First making a wrong judgement answered to me in the hospital a few weeks ago.

    Shouting at me you are not disabled. This is for those in wheelchairs.  I replied back what do call that with my hands and I have an addiction history.  Which has effected the bladder and everything else.

    Have to go and need to use what is there and as it is a  disabled toilet.   

    From a so called member of the staff who has nothing better things to do than have a go at some one who is of a need.

    Told him the honest truth .

    Is this the society we want to be in living in. People going around with clip boards. Checking who is disabled or not to use what is an essential need.

    God help us all and I pray every night for those going through enough in their lives with out getting a lot of hassle just wanting to go to the toilet..

    Thing was though noticed no toilet near reception as I scurried out of the hospital. So I bet the staff used the disabled toilet , seems the nearest one.  Just a thought .

    Take care

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • JulesA65JulesA65 Member Posts: 33 Courageous
    It is very sad that a lot of people thing all disabilities have to be "visible" or "on show". I have joint problems in my knees - usually hidden beneath trousers or long skirts. In cold weather I struggle going up stairs - so yes I WILL use the disabled toilet on the ground floor lol I usually go after my husband has been to i can use his RADAR key or he will open the door for me lol. People are so judgemental and ignorant. There is a saying or even a couple spring to mind - "Never judge a book by its cover" and "Let him without sin cast the first stone". The latter to me is - if you are so perfect then lucky you!! 
  • jackieannjackieann Member Posts: 1 Listener
    In this day and age the toilets should be multi functional for people of all abilities.  Not all disabilities are visible.  
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,373 Disability Gamechanger
    Ami2301 said:
    I don't understand why it is so difficult for others to have empathy. If you went back to that moment, would you have said something to her?

    Unfortunately lack of empathy is not restricted to the healthy. Here is a couple of  examples from one thread on the community.

    "and how the people who stay there are not people you want to mix with. They house ex-cons, those who have left care and the disabled. I have no problem with ex-cons - if they want to change." so some empathy if you are a reformed convict.

    "This  or that person ticks the box for a conveyor belt leading to priority of available housing. Why?   

    Immigrant, convict, alcoholic, junkie, mental health, learning disabled,  ex forces, breeder of children, single parent, evicted tenant, and, the current fashion,  domestic violence. "

    Just two members who are quick to dismiss those with disabilities, and one stating that you would not want to mix with people with disabilities. We have a third who regularly posts about those with 'real disabilities' - ie those in wheelchairs, effectively dismissing those with 'unreal' disabilities.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • micope60micope60 Member Posts: 1 Listener
    There are a Host of Reasons for People to use Accessible Toilets & it is not necessary to be Wheelchair bound to qualify. I have Minor Incontinence, which may not sound like a great Disability, but given the choice, I prefer to nip into an Accessible Toilet than say, climb Stairs, or go into Basements to prevent an embarrassing event. Age UK Incontinence Advisers provide a Free Card saying "Please give me Priority, I need to go now!", which is helpful to everyone, I think.
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Welcome to the community, @micope60!
  • spinbobbinspinbobbin Member Posts: 14 Connected
    I have Pm_scl basically my body is turning to stone I'm on some hearty meds that give me an unpredictable tummy and yes I have accidents I don't like messing my pants but it happens when it does I have to use the disabled toilets . Unfortunately I don't have a card saying I'm disabled but in a small cubicle there is not enough room for me to change I wish I had a sign round my neck ! 
  • StyalStyal Member Posts: 4 Listener
    A salutary reminder about disability and thank you for sharing the issues you've had. I think it is good that nowadays quite a few places and retail stores have a notice by the disabled toilet to remind people that not all disabilities are visible. A few years ago I was at a racecourse where the disabled toilet was directly between the gents and ladies toilets, both of which had long queues. I have a 'visible' disability and was in my wheelchair 2 metres back from the disabled toilet door to allow sufficient space for the person exiting, if they were wheelchair bound or had a rollator. When the person came out, not wheelchair bound, a guy from the gents queue quickly nipped in even though I shouted at him as he was shutting the door. So rude. The course has more recently made a radar key necessary to use the disabled toilet so preventing this situation I hope. On a not unrelated issue, why do so many disabled toilets not have a mirror? We (especially ladies) would like to check our appearance, brush our hair, renew lipstick,etc just as others can. Have occasionally challenged establishments about this by asking whether the Ladies toilets have mirrors, and when get a strange look and affirmative response, then I inquire why does the disabled toilet not!!

  • crippscripps Member Posts: 412 Pioneering
    I’m a disabled person in a wheelchair and unfortunately i can’t be too far away from a toilet 🚽. I’ve visited several toilets in my time and I’ve never come across a clean one. As soon as you go in you don’t want to be there but unfortunately i have to use it. The biggest problem I’ve found is most of them you don’t need the key to get in which is a big problem because people that aren’t disabled use them and leave them in a right mess not thinking that it has to be clean for disabled people with extreme health conditions. All that’s required is for companies to think about what pressure a disability brings . Maybe companies don’t care anymore. 
  • jae377jae377 Member Posts: 27 Courageous
    I get this all the time, My spinal cord damage (amongst other things)  causes "issues" below the my waist and means that walking is painful difficult and slow and I fall a lot, when I need a toilet it is urgent as the "early warning" signs one usually gets are absent (urge incontinence). I also need the support rails in disabled toilets. 
    Not only do I get glared at but quite often I have to wait to discover that the toilet is being used by women rather than queue for the ladies. Conversations with  accompanying friends make it plain that this is the case not a hidden disability.
  • loyloy Member Posts: 4 Listener
    Just by reading these comments it seems to me that people in wheel chairs are very judgemental. 
    There is actually no law against people with out disability’s using a disabled toilet. I am visually impaired and find stairs nearly impossible so I would need to use disabled toilets if there wasn’t a lift to ordainsry toilets 
  • AnneMcCAnneMcC Member Posts: 1 Listener
    I am annoyed with people who think it is ok to use the disabled toilet to save them having to wait in a queue. I've heard of people doing that
  • jae377jae377 Member Posts: 27 Courageous
    loy said:
    Just by reading these comments it seems to me that people in wheel chairs are very judgemental. 
    There is actually no law against people with out disability’s using a disabled toilet. I am visually impaired and find stairs nearly impossible so I would need to use disabled toilets if there wasn’t a lift to ordainsry toilets 
    Do not understand your comment. disabled toilets are for just that disabled people, it is a sad day when one demands that the law is used rather than common decency and good manners to enforce toilet use.  Nowhere does it state that the disability has to be a mobility issue. Your visual impairment is just as much a disability as others mobility issues although it would appear you do not wish to view it that way.

  • loyloy Member Posts: 4 Listener
    Other people don’t 
  • GavelGavel Member Posts: 15 Connected
    We used to have a Closomat loo which I bought in a local auction. We now have a Bio Bidet at home which is a toilet seat with a douche. I've adapted our old camper van so that Sue with PPMS can use the loo and I can shower her if needed. Life is good.
  • crackercracker Member Posts: 324 Pioneering

    What a sad lesson in lack of sensitivity, empathy and downright decency.
    I have an **** gland prolapse, which can be very embarrassing  and more., I have to deal wit h it every day.

    So I have an idea of how troubling your condition is. My friends think it off that I get up and visit the toilet so often. I carry extra undies with me wherever I go.

    I do agree about the reactions in the disability community. Psychiatric illnesses also ignored, seen as fakes who just want to be on benefits.

    It is so good to have the understanding and support here. I read all your posts, and you are a terrific person.

  • LeandrosLeandros Member Posts: 1 Listener
    My adult son is autistic and though he looks 'normal' he has many severe mental problems, and needs me to take him to the toilet - for one thing, he has IBS and has trouble wiping - and I'm so fed up with people having a go. I used to ignore thwm, now I tell them that mental health disabilities are as important as physical health ones, and how would they feel if they were disabled in a way that couldn't be seen, and someone had a go at them? It makes me so angry! I think there should be a sign on disabled toilet doors to say that not all disabilities can be seen, and people don't have to be in a wheelchair to need to use the toilets.
  • GordonmrlnGordonmrln Member Posts: 35 Courageous
    Dear Sam, I totally understand where you are coming from as both myself and my late wife where Disabled. Although my Disability was quite obvious as I suffer from OA (Osteo Arthritis) and I used a walking stick and when it was really bad a wheelchair, so people seeing me could not question my Disability. However, in my wife's case, it was a different kettle of fish, my wife suffered from a serious heart condition which comprised of Cardio-myopathy and Arythmere she also had a floppy heart valve which constantly caused blood to seep back into the heart, so my wife needed to be on warfarin constantly plus a boatload of other medication, she also had an ICD implant fitted under her skin near her heart, and this was like having your own paramedic should the heart fail or go into such a rhythm that it was at a dangerous rate then the unit shocks the heart back to a stable level. But to look at my wife there were no visible signs that she was such a poorly person, and one day we were visiting a local garden centre and we pulled up into the Disabled parking space, whereas my was getting out of her side of the car she could see this couple giving her a look of disbelief, and she just shouted out it's a pity people can't see when you have a heart condition, and she gave the couple a glancing stare. And then she just closed the car door and was away into the garden centre without another thought, she sais once we were inside that felt really good, I'm sick of people looking at me everytime I get out of the car in a Blue badge space as though I have no right to be there, that might make them think twice she said. Sadly I lost my wife recently but she was a fighter for those with disabilities that could not be clearly identified, and I know she would have put her thoughts and support down here for you Sam so I've done it on her behalf, you keep on fighting those ignorant people who clearly have not got a clue on people in general, they walk around with blinkers on and can't see past the end of their nose. Sad that life is full of these idiotic and bad mannered people, but I've noticed that they soon change their view when they or somebody close to them is affected by some Disabling condition and then by some miracle they totally change how they view Disabled people in the world, Sad that this has to happen before people stop to think about other people in general. Good luck Sam and keep on the Fight for your right to party.  ;):)  
  • hackporthackport Member Posts: 11 Listener
    Hey Sam,
    just wanted to say a big thank you for the blog which really helped me when I had op for crohns and ostomy😀 So good to hear from someone who has lived through stuff. On the toilet issue, I failed to persuade employer to keep disabled loo locked so only disabled could use, sooo full ostomy bag, change needed- no loo available, that was a nightmare time!
  • AraAra Member Posts: 2 Listener
    Hi all! 
    I'm not in a position where I need to use disabled toilets but I did notice something in my local Morrisons store just last week. The disabled toilets now have a sign outside reminding everyone that not all disabilities are obvious to try to help those who do need to use them get fewer looks and snarky comments. I have also read recently that every single store has a quiet hour on a Saturday morning for people who find noisy busy environments difficult to handle, which is where my needs come in. They dim the lights, turn down the volumes on the tills and don't play any music. They also advertise outside that it is a quiet hour and encourage other customers to respect that. Other supermarkets are also trialling it in some of their stores. A quick e-mail from customers to their head offices, detailing what other companies are doing, is often all it takes to plant the seed for more places to follow suit. A simple note on a toilet door would save a lot of people the embarrassment of other people's comments.
  • janice_in_wonderlandjanice_in_wonderland Member Posts: 265 Pioneering
    I have been on the receiving end of misjudgement... being asked whats wrong with me - maybe people need to be more educated to leave others alone who are already suffering enough... getting to a toilet in time means alot! I cant go anywhere unless I know I can use a toilet - its a challenge every day! 
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Thank you so much for such lovely comments, I am glad this has got us talking about someone that effects so many people!
    Senior online community officer
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