Inspired by personal experience, Rhian Elizabeth reflects on the challenges of navigating accessible toilets with unseen disabilities and sets out why, what we really need to do, is get talking about disability.
There’s no point in Disney-ing it up- I spend a lot of my time on the toilet. I have Multiple Sclerosis and, with that, comes a load of bladder and bowel issues. You don’t want to know all about them, I’m sure, but, since I seem to find myself stuck an awful lot perched on these ceramic thrones in the narrow white chambers of flushing and wiping doom, toilets are the places where I do most of my thinking.
Today I am in the disabled loo at Marks & Spencer. Not a place I frequent a lot, because it’s fucking expensive, but you can always rely on there being a toilet facility here. My guess is it’s because it’s where a lot of old people shop, and old people are always needing the bog. My journey to this particular toilet was not a smooth one. It’s a Saturday, the shop is busy, and there seems to be a lot of people all needing a piss or worse at once. There’s a queue, not quite on the scale of the one at Mrs Windsor’s recent funeral, but it’s substantial enough. But then I spy it, the disabled toilet, and it’s vacant. Fantastic, I think to myself, bladder ready to spill, and of course I am a little smug as I skip past said queue, all Phil Schof and Holly-like in my special strut.
As I reach for the handle I feel a furious tapping on my shoulder. I turn around to find a woman with a very stern look on her face. “That toilet is for the disabled!” she half shouts at me, and it causes a bit of a kerfuffle in the queue as others look on, by the look on their faces some of them clearly agreeing with this woman’s attempt at policing and ensuring justice is served in the toilet queue of Marks & Sparks.
“But I am disabled,” I explain. “I’ve got MS, you see, and I could stand here all day telling you about my symptoms but you’d soon find us both standing in a puddle.”
The woman is mortified, apologising profusely. Please, she says, please carry on. And so, I enter the toilet, held head high but bladder almost to the floor. Inside it is not a narrow chamber but a palatial suite in comparison to the normal people toilets next door. I lock the door behind me and sit upon the throne, white space all around me, a clean skin, as much room in front of me as I want to kick my legs and enough floor space to do a break dance on, if I wish. It is there on the toilet where I get to thinking about a campaign I was recently asked to be involved in, a project where I was invited to write poems about my experiences of being treated badly by people who do not recognise me and my indivisible disability.
I did not write anything because I did not like the rhetoric around it. It all felt a bit aggressive, LOOK AT US!, a bit needy, a bit polarising, a bit us versus them, and I don’t like putting myself in a box. There was even an expletive and an exclamation mark in the title of the book. Nah. I am not a disabled writer. I am a writer. And I have nothing to complain about, because I don’t believe anyone has ever treated me unfairly because I have MS, and my invisible disability has always been treated with respect and understanding by the people around me and at any work event I have participated in I have always been catered for, when I asked and told them about it and my needs.
In M&S had I just experienced what many people with disabilities that are not instantly obvious experience on a regular basis? Yes. And it is not the first time. Although the feeling I got wasn’t one of injustice or unfairness, and I didn’t feel slighted or hurt or angry. I suppose I was meant to write an angry poem about this, about this awful woman who had pre-judged me and who had made me feel bad and sad, and how terribly I was treated.
I get how much of a big deal this is. I get that people have the right to feel this way after years of discrimination, that this is part of a huge conversation about the mistreatment and prejudice and difficulties disabled people experience on a daily basis, how this impacts people’s lives and that it is a massive subject that needs to be tackled, but I think we are too quick to dive into conflict, too quick to start unnecessary fights. I’m glad there are people out there campaigning and doing all that work they do with various charities or organisations or whatever. Obviously.
But to me it is not a big deal. I don’t care that someone didn’t realise I am ill. The clue is in the title- invisible disability. If you can’t see something, then how are you meant to recognise it? It does not illicit feelings of anger and it does not make me want to go and make a banner and march. Of course, people with invisible disabilities shouldn’t feel challenged or bad about using disabled toilets but, you know, this is an opportunity not a battle.
What happened just now, instead of getting all upset and angry and hysterical about it I saw it like this:
- I basically just got given a compliment. I don’t look sick. Great!
- That lady tapping on my shoulder probably had good intentions. Maybe she is just pissed off that she’s queueing and I’m not but one way to look at is… she thought I wasn’t disabled, so she was trying to ensure that I’m not taking advantage, that that toilet was actually free for someone who is disabled and needed it.
She got it wrong. But I just explained to her that I had MS and she was absolutely embarrassed by her mistake, apologising her tits off. My point is that we don’t need to make enemies out of each other or come at everything in a defensive, angry and combative fashion. Let’s give each other the benefit of the doubt. How was that woman meant to know I had MS?
The world is changing in so many ways, and for the better, where we are now challenged and made to view people who are different to us in some way in a changed, empathetic light, and in a way that we haven’t been asked to before in times gone by – with the respect and compassion that gives them the just opportunity to live their lives as freely as everyone else does. This doesn’t just apply to the disabled. This applies to transgender people, gay people, people of colour disabled people, the old, and on and on.
We all have to learn. All of us. But let’s not go about it all angrily and aggressively, with a view to making an enemy before we’ve even started the conversation. Tapping lady shouldn’t have assumed, no, but she’s not the devil. And plenty of people who do not need to use the disabled loos do just that; I could’ve been one of those people shoving in. In fact, before I had MS, I confess that I have illegally parked my arse on those high toilet seats and enjoyed the luxury of the massive space in front of me meant for a wheelchair. Loads of times. Because I was busting. Because I couldn’t be bothered to queue. Just because I didn’t think about someone else needing it more than me and just because I could.
Again, not the devil.
We need to talk. Most people are good people. Most people care about others but perhaps find it difficult with all the protocol around how you are supposed to treat people with disabilities etc, what you are meant to say, are allowed to say, or if you will say the wrong thing. Maybe it should be a given, but most people are still trying to figure it out. We shouldn’t attack people just because they didn’t get it right for us. We shouldn’t instantly declare war against them. The world is changing in so many ways, and for the better, where we are now challenged and made to view people who are different to us in some way in an altered light and in a way that we haven’t been asked or required to in times gone by – with the respect and compassion that gives them access to the same rights and ease of life that everyone else enjoys. This applies to transgender people, gay people, people of colour, and everyone else who somehow doesn’t fit within the boundaries and little box of whatever the hell normal is.
We all have to learn. We need to be educated. All of us. But we won’t learn if we come at each other with knives sharpened and bitterness. Instantly backs are up. Instantly divides are created. Let’s not go about it all angrily and aggressively, with a view to making an enemy before we’ve even started the conversation. Cancel culture is hideous. I loathe it. There are some things that should not be said, and some things that certainly should not be allowed to be said by public figures, or anyone for that matter, on a public platform, or anywhere else in society, but we all know what these kinds of things are, and they are different. There are thousands of vile people every day at keyboards saying vile things to each other, to celebrities, to strangers; bullies, unpoliced, just as they are there are on the streets, and you will never get rid of these people, some people are just pure stupid, stupid shitheads- but we are not talking about these kinds of people, these kinds of clearly intolerable and abusive, criminal statements or acts of obvious bullying. We are talking about people who are just trying to have a fucking conversation. Who are just trying to get their often well-meaning but probably clumsy attempt of understanding or resolution heard.
But cancel culture is dangerous and aggressive and often nastier than the comment or opinion that caused said cancelling in the first place. It is lazy and cowardly to just silence someone. What is learned? What is changed? Nothing.
We must talk like adults and not let anger and past discretions cloud our ability to do this. It’s the only way we will get anywhere. I could’ve shouted at that woman, I could’ve written a poem about her for the anthology, but she is not the embodiment of years of unfairness and oppression against disabled people. She’s human. I finish up and she’s there waiting for me outside the toilet. She is again apologising and telling me how bad she feels. It’s okay, I tell her, no harm done. I hope you didn’t have to wait long in the queue. I’m not sure how this situation would’ve turned out if I’d gotten in a hissy fit about it all. She didn’t mean to offend me. She wasn’t trying to diminish my disability or my rights. She just didn’t understand.
Everyone won. She learned a little something about people with invisible disabilities and I, bladder suitably emptied in a speedy fashion, went on my way knowing I’d educated someone a bit and also with that compliment to boot… I don’t look sick. I probably shouldn’t have been using the toilet anyway as it’s for Marks & Spencer’s customers, but whatever. I understand the anger. I understand the pain and frustration. Or maybe I don’t. But I am not writing an angry poem about how unfair everything is. There were so many of those in that book and I just think it is time wasted when we could just be talking to each other and sorting things out. I’m writing about how we shouldn’t get our knickers in a twist so often. Pull them down, enjoy the disabled toilet guilt free. Finish up. TALK IT OUT. Always wash your hands.
Rhian Elizabeth is a South Wales-based fiction writer and author.