Give us our toilets back

Whenever I’m confronted with an equal opportunities form I always lie. I tick the box indicating that I don’t consider myself to have a disability. Really I do. I’m not sure why I choose to tick that box – perhaps I’m trying to trick myself. Maybe it’s because I’ve worked quite hard to conceal my ulcerative colitis over the last 23 years. Very few people know I have it. A few others might have picked up on it. But I’ve mostly found ways to make it as invisible as possible.

Concealing a malfunctioning bowel takes a lot of work and planning. The disease is sapping but so too is hiding it. I’m not sure why I bother. Maybe I don’t want to show my weakness and vulnerability, maybe I just want people to respond to me rather than the disease. I’m not really sure.

Just over a year ago something changed. I decided to stop feeling ashamed. I wasn’t feeling morose, but I’d long felt like I wasn’t a proper human being. Disguised by a veil of careful preparation I lived a partial life. Like many others, many of whom will have suffered more than I have, it’s a life tainted by chronic pain and disease.

The blood and gunk shifts your mindset

Rewinding back a couple of decades, I received my diagnosis in a humdrum and well-worn hospital in the East Midlands. I’d been ill for a while and had eventually overcome the delusion that I was going to get better on my own. After some probing examination – you can guess the form this takes – they told me I had an inflammatory bowel disease (IBD). That was a bit of a surprise. The fact it was chronic was another – I wasn’t even sure what the word “chronic” meant at first. And I’d definitely never heard of the disease. I knew absolutely nothing about it. The major surprise was that, back then, knowledge of the condition was so sketchy. I now understand why. I left the hospital with a folded A4 leaflet, some medication and a lot of unanswerable questions.

In spite of the pressures brought about by austerity, the NHS’s approach to IBD has moved on radically since those days. The care I receive from my local hospital is delivered by a thoughtful and responsive team of highly trained specialist nurses.

Back in 1998, just turning 21 years old and hit with a heightened sense of my own mortality, my youth sharply ended. Chronic disease changes you, or at least it changed me. The blood and gunk in front of you shifts your mindset. Open horizons were pegged in, there were narrower boundaries to what was physically possible.

What I miss most is the feeling of total freedom. Freedom of movement and freedom from fear. The ebbs and flows of colitis always leave you guessing. Trying to work out what triggered it, when it will end, when the next flare-up will come – that type of analysis of your own body is tiring and preoccupies your thinking. I frequently wonder what I could do to make my bowel feel better or what might make it feel worse. Can I feel an ulcer, will more come?

Sometimes the symptoms make it hard to do things, but there is also the nagging concern that pushing yourself to do more will exacerbate the symptoms and potentially slow down the recovery. The times that are referred to as remission are punctuated with thoughts of what the next flare might bring.

Since my first flare-up in 1998 I’ve been attached to the nearest toilet by a strong piece of elastic. The state of my bowel simply lengthens or shortens that elastic’s length. Sometimes the elastic is longer, other times it can be extremely short. On those occasions we are talking tape measures rather than trundle wheels. You try to move further away from that nearest toilet and the elastic pulls at you. When visiting somewhere, the question is not just whether or not there is a toilet but whether there are enough toilets.

The body is not something we can detach from its environment. My bowel bleeds in a social context

The discomfort and fatigue are a big part of the story, and these often get discussed when IBD occasionally reaches media coverage. What I’ve found is that the spectre of fear also looms quite large, appearing every now and again as a reminder. Fear of the disease and when it will hit hardest. Fear of missing out, fear of letting people down or of not being able to do things. Also a fear that your life force is slipping out of your rectum. Sometimes IBD is as much about living with an unknown future as it is suffering in the present.

Of course, the body is not something we can detach from its environment. My bowel bleeds in a social context. Having colitis makes it clear that the world was not designed by people with IBD. Amongst the wider degradation of public and municipal services caused by austerity, the closure of public toilets is part of a bigger picture. In 2016 it was reported, following a freedom of information request, that 1,782 toilets had closed in the UK since 2010. The issue is that councils are not required by law to provide public toilets and so they are easily lost in cost-cutting exercises. As well as affecting everyone, this has very direct consequences on many who carry the scars of disease and disability. Flicking through the local paper I recently noticed a 1940s photo of a main street in York. There at the forefront of the image was the public toilet. That same toilet is now closed. In fact, the two public toilets in York city centre have both closed in recent years. One was flattened. The other turned into a café. The march of austerity.

In a wonderful piece for the LRB the writer Owen Hatherley, who has Crohn’s disease, explored how the private and public mix together with these health conditions. The removal of public toilets, he points out, creates a challenge for the relations between the public and private. Hatherley calls for public access to private toilets as part of a broader redefinition of public-private relations. Compelling stuff. Don’t deny us our right to excrete – we don’t have much choice about when it will happen. Give us the access we need.

The symptoms associated with IBD are now becoming more widely known. The charity Crohn’s & Colitis UK provides excellent information about IBD, with booklets, personal accounts and videos. IBD affects more than 300,000 people in the UK alone – estimates put it at about 10 million people worldwide. This is not a marginal thing – it’s massive. Maybe that scale also presents an opportunity to think about how we could ask for things to be designed to make life a bit easier. People with IBD aren’t the only ones who call for the dignity of accessible toilets. For a start, it should become law for local authorities to provide high quality facilities. Anyway, as we rebuild the world during and after the pandemic, I’m sure most people would be glad of having an extra toilet or two about the place. It would also help that elastic lasso to stretch a bit further.

Colitis often feels lonely and isolating, like the world is getting on with things whilst you sit out the game of life on the ceramic bench, but there are actually quite a lot of us sharing in that experience of fatigue, pain and solitude. Our bowels are very personal; we feel them as a physical reality. Yet the bowel is also social. It governs how we go out into the world and what we can do once out there. Let’s call together for the dignity and respect that comes along with access to a toilet.

Dave Beer is professor of sociology at the University of York